Four years old
Happy holidays!
Home, home, home!
Recovery
Unexpected Open Heart Surgery
Fenestration-closing cath
One year post-Fontan!
NSTAR's Walk for Children's Hospital Boston
3 years old & cardiology visit
Wild Man
Update and Santa
Blue episodes and a cardiology appointment today
Ellie's Fontan
Post-Fontan Cardiology Visit
"You've gotta just let him be."
Sammy's Recovery from the Fontan
Life Post-Fontan
Bump from home
We are home!
Fontanized - Day 6 Update
Day 4 Post-Op 2:30pm Update
Fontanized, Day 4 Post-Op
Bump #2 - Pneumothorax
Little Bump
Fontan Post-Op, Day 2
Extubated!
Fontan Post-Op Update
Fontan Day
Fontan Pre-op Done
Checking in
Update, 2 years old, Fontan date, more
And we're free!
Pre-Fontan cath DONE.
Cath Day
Day 1, Pre-Fontan Cath Prep
Pre-Fontan cath
Twenty-three months: chatterbox, the holidays and the cath
Twenty-two months
Cardiology visit
Eighteen months
Seventeen months
Early Intervention Assessment
Fourteen month update
Miles for Miracles - Together in Heart.
Sedated echo
Look who's one!
One year.
11 1/2 months old!
Almost 10 months old!
Cardiologist Visit
Just about nine months!
Who is this kid, and what did you do with my baby?
Eight months old!
7 months old!
Coming up on 7 months
Six month update
Post-op Checkup & Life post-Glenn
And we're outta here!
Waiting to go home & a few firsts...
Truckin' along
Step-Down!
And the lines are OUT!
Happy updates
Post-Glenn, Day 4
Post-Glenn, Day 3
Post-Glenn, Post-Bronchial Spams, Day 3
Not fun - post-Glenn, night 2
Post-Glenn, Day 2
Post-Glenn, Day 2 - morning
Post-Glenn, Day 1, part 2
Post-Glenn, Day 1
He's out!
In surgery - updates
the wait
The night before the Glenn
Preparing for the Glenn
Update & Surgery
Milk Allergy Fun
Chatty Sammy
Cath Hospitalization
Catheterization
Gasmonster!
Teaching Sammy about the world.
Miles for Miracles
First bath!
Gassy infant prodigy
Rockin' Sammy
Revelations about mamahood
Babymoon, Part 2
Babymoon, Part 1
Home Sweet Home
Discharged!
Rumor has it...
Stepdown, Day 2
We have step down!
Today was pretty mellow
No step-down for you
Time to buy stock in St. Joseph's
One step closer
Extubation!
One step at a time
Done with the closing
Chest Closing
Birth story
Chest Closing & Mama in Triage
Recovery
Out of Surgery
Welcome, Sammy!
Samson Arrives
Labor update
Of due dates and inductions
Baby Grace
Snow baby?
Welcome to the jungle
Getting closer...
37 1/2 week update
Fighting the bad thoughts
Getting bigger - and closer!
31 weeks with Dr. Brown, CHB
31 Week Appt. w/ Dr. Johnson
One big monkey!
Starting to Get Ready
30 Weeks and Full-blown Panic
Silly Pregnant Lady
27 Week Visit
Fears
EFO Shout Out
Weird Pains & an Early Morning Trip to the Hospital
Fetal Echo at Boston Children's Hospital
DiGeorge's - Negative!
Evil Genetics Counselor
Full amnio results
22 weeks and Life Now
Pediatric Cardiologist
Redefining Normal
FISH Results
Embarrassing the poor boy already
The Baby's Name
Post-Amnio
Pre-amnio, Baby痴 name riddle
Reiki energy, and not being alone
Friends and Tarzan
Trying to get through the day
The diagnosis
Trying to stay positive
Pre-Diagnosis
Doctor Visits
Fontan
General Updates
Glenn
Life with Sammy
Norwood
Other HLHS families
Support
Surgery & Recovery
Surprises
Test Results
Worrying
Sammy turned 3 on February 24th, and celebrated a few days earlier with a party with all his friends at Imajine That, a local indoor "imaginarium" playground. He had a blast running around and being a typical three-year-old boy. And it was a blast watching him! On his actual birthday, we had a quiet celebration - just the three of us. Well, quiet until the ice cream cake we gave him at 7pm kicked in! Note to selves: cake should be given no later than 11am. Ever.
It's hard to believe we're at three already. He's so bright and energetic and loving and polite and sweet and curious and SO FREAKING CUTE. We got lucky with this one, I tell ya - and not just when it comes to his heart! ;-) He truly is such a kind, wonderful little boy.
Sammy had a check-up with Dr. Brown today, and it was perhaps the best check-up he's ever had! He was so brave. He understood everything that was going to happen and would tell us when he was ready for each part. When it came to the pulse ox, we first tried it on Daddy, then his Little Einsteins dolls and then he was ready. I loved watching how he psyched himself up for things! We told him that the blood pressure cuff would pump his arm to make it super strong so he could REALLY rock out on the guitar. After it was done, he said he needed it on his other arm so that one could rock out too. Too cute.
He came in at 28lbs (which is sooooo not accurate, since he was fully dressed, but it was still nice to see!), his sats were around 80, his heart rhythms were great (no sign of arrhythmia) and his mitral valve regurgitation was so mild that Dr. Brown could barely hear it! Because his sats are staying low, however, it's a pretty sure thing that the fenestration won't close on its own. We're looking at at cath to close it either next fall or next spring - he's pretty much leaving it up to us and our schedule.
Dr. Brown also said he'd put Sammy in the 99th percentile of all his patients when it comes to how well he's doing with his heart - he's doing that well.
All in all, a great visit!
Comments (6)
As many of you know, Sammy's been having a bit of trouble with his oxygen saturations lately. Oxygen saturation, commonly abbreviated as "sats", measures the percentage of hemoglobin binding sites in the bloodstream occupied by oxygen. (from wikipedia) Heart-healthy people are typically at 99-100. Sammy, right after the Fontan, was in the low 70s. The lower the sats, the bluer a person will look and the amount of oxygen circulating throughout the body (and to the organs) will be lower.
During the Fontan, they created a fenestration (a hole) to help his body handle the change in pressures with his new circulation. His fenestration was "generous" and we knew that his sats would remain on the low side until they closed the fenestration by cath in a year or two. His cardiologist was fine with this, and we all expected his sats to increase over the months following the Fontan. And they did - Sammy was up in the 80s for a while this summer. We knew, too, that the more active he was, the more mixing of blood across the fenestration there would be, and the bluer he would turn until he calmed down and rested. Again, no one seemed concerned about that, so even though I think it unsettled us both a bit, we trust his cardiologist very much.
Over the past few weeks, Sammy has had a couple of episodes where he turned very blue. (Think blue-raspberry lollipop mouth and purple fingers.) We put him on the sat monitor, only to find out that he had dropped into the 50s. Since he remained (incredibly) active through it, his cardiologist didn't think it was an immediate need to have him seen. What is more concerning to them, however, is not those blue "episodes" so much as it is that his overall sat levels have decreased over the past few months. Where he was in the 80s over the summer, he is now back into the low to mid 70s - not ideal. And that they decreased instead of increased (and settled out) means a fun ol' trip into Boston for us. Since there shouldn't be much fluctuation post-Fontan, and since he's remained very active, they don't believe it's anything cardiac. The job now is to figure out what, if anything, it is.
Today, Sammy is scheduled for an EKG, xray and echo. Please keep him in your thoughts. We're hoping that it's just Sammy and these shifts in saturations will be fixed once he has a cath to close the fenestration. But please pray that if there is a problem, it is easily detected and easily remedied. Thanks so much.
Sammy had his 3 month post-Fontan checkup today. It was a wonderful visit! Dr. Brown said that he could barely hear the tricuspid regurgitation and that everything else looked and sounded great. Sammy's sats were at 81, which is great considering we were seeing high 60s back in June. This means that the fenestration settled in and closed up a bit on its own over the last three months. The fenestration likely will not close completely on its own, so Dr. Brown said we're probably looking at a cath in 1-2 years to close it. In the meantime, he said, he'd love for Sammy just to be able to be a little boy without all the medical stuff in his way.
We don't need to go back for another 6 months - which as Jay pointed out, we don't have to go back until next year! At some point in the next year they'll do an echo and a holter monitor, but in the meantime, we can get back to living life on the other side of the Fontan. Yay!
Comments (5)
How have I let months go by without updating? Bad mommy!
- Sammy turned two! We had a toddler party at a local indoor playground, and Sammy could not control his excitement! For weeks leading up to it, all he could do was tell everyone about his party and his cake and his cupcake and the balloons and all his friends coming to play. He had an absolute blast! You can see a video here.
- He had a post-cath, pre-Fontan check-up and did very, very well. He sat for the xray and told us all about the balloon he wanted to get when he was done. He wasn't a fan of the EKG, but even still, he did so much better than I anticipated. He even let us have a real conversation with Dr. Brown - of course, he spent those ten minutes covering Dr. Brown with stickers, but all in all, there were considerably fewer tears than I expected. He looked and sounded good, and we're a go for the Fontan on May 21.
- Yup, May 21. Preop on the 20th. Expected stay is 7-10 days. Trying not to think about it, want it to be done already, want to get on with our lives and have a summer full of Sammy fun ahead of us. It'll be nice to be past the purple fingers and wheezing and the getting out of breath, but the thought of handing him over again? There are no words.
Otherwise, Sammy is fantastic. He is developmentally on or ahead. He is speaking in clear, complete sentences - we're talking 8-10 words without a pause, sometimes more. He "reads" his books to himself (loves Knuffle Bunny, There's a Mouse About the House and the If You Give... series), knows all his colors and shapes, can count to 20 (though skips from 7 to 12 for some reason) and can sing the alphabet, though we're still working on letter/number recognition. He is still obsessed with music, can name instruments on sight (close to 25, including the oboe and bassoon!) - and many on sound ("Do you hear that, mama? Is that a violin? No! That a CELLO!). Thanks to Little Einsteins, he uses words like "moderato" and "fortissimo" in normal play. He absolutely amazes us with his love for music.
He loves to have "pick-i-nicks", insists that we all drink together at the dinner table (waiting for him to kick off a toast one of these days), loves chicken nuggets dipped in ranch & ketchup, is using the potty more and more, and still taking bottles at nap and bedtime - but is FINALLY napping in his bed and not the swing! He's just over 24lbs - he clocked in at the checkup at 24lb 4oz, but we've gotten him at 24lb 10oz at home. He's still on Enalapril and baby aspirin, for those heart folks who are following that kind of thing.
Thanks for checking in on our little guy (and for letting me brag a bit :-)). Your love and good thoughts are much appreciated.
Comments (8)
It took some serious begging and the absolute promise that we would go no further than the hotel across the street for the night, but they discharged us. We'll keep an eye on him for the evening, and as long as he looks and is acting fine in the morning, we'll be home before lunch.
WOOO HOOO.
Can I tell you how ridiculously impossible it is to get a 2 year old to lie absolutely still for SIX HOURS post-cath? Or how thrilled I am that we had a nurse who caved into our requests for a wagon to wheel him around in? Or how wonderful the staff was when we snuck into the patient bathroom with a flashlight to entertain Sammy for just a few more minutes?
Do I need to even begin to tell you how happy I am to be in the hotel and to have the cath behind us?
Comments (5)
The doctor just came in to let us know he was all done. He's fine and we should be able to see him in about 45 minutes.
Of course, as soon as the door opened and I saw a white coat, I went into cautious panic mode. Here's how the beginning of the conversation went:
Hi, I'm Dr. So and so, I did the procedure on your son, I'm sorry -
And I panicked for a few seconds until she finished up with - I wasn't there to meet you beforehand.
HELLO! You NEVER start a conversation like this with "I'm sorry..."!!!!!!!!!!!!
Sammy's cardiologist came in to talk to us, told us Sammy's a great candidate for the Fontan - his pressures are great, his ballooned aorta is one of the best developed ballooned aortas they've seen, everything looks fantastic. They did have to coil off one collateral artery off the aorta, so it's iffy as to whether or not we get to go home today. They're currently applying pressure to the entrypoints, and once he's all settled, we get to go be there when he wakes.
Phew. Step 4 out of 5 in this journey done - Norwood, pre-Glenn cath, Glenn, pre-Fontan cath. Now, one more step ahead of us and hopefully the last one for a very, very long time.
Comments (3)
Sammy's back for the cath right now. It took a LOT of sedation to make him mellow out, and even then, they told us it took a long time after he was back there to knock him out. It breaks my heart to think that he was awake - even if he won't remember it - but that he was awake and we weren't there with him. I promised him we would be there. I'm having a hard time with that.
Update from the nurse - which was so much later than we expected (and only because I was starting to panic and made Jay go ask) because they were having such a hard time getting him to fall asleep: they have a cath in each leg and in one shoulder. They're currently taking pressures and pictures right now, and then they'll look for collateral veins they might need to coil off.
We expect another hour or two before they're done. We'll update when we can.
Comments (1)
Pre-cath fun done! There were the expected amount of hysterics (Sammy's and mine), but he really was such a brave little man. We were sent first for x-rays, then blood work, then an EKG and an exam. He even did well while we talked over what to expect tomorrow with the Fellow, learning to blow bubbles and playing with his Blues Clues toys.
We were done by 11, which was nice. We had lunch, Sammy got his fill of Disney TV in the cafeteria (what hotel doesn't have Disney and then charges $10 for a 24-minute On-Demand episode of Mickey Mouse Clubhouse?!?!?) and has been napping since 1:30.
We report back tomorrow morning at 7am for his cath. They expect it to take 1-3 hours. Jay and I will be able to be with him until he's sedated and ready to go, and then we will be there when he's waking. Since we're first case, there's a better chance we could go home tomorrow, but I'm not getting my hopes up. It all depends on whether or not they'll need to do work while they're in there.
Our friend Shannon wrote up a little bit to help explain what's going on:
The short answer is the heart cath is being done to determine if Sammy will be a good candidate for the third of the three staged surgeries used to treat (not cure) HLHS. The first ("Norwood") is done shortly after birth and is mandatory; the Glenn (aka bi-directional Glenn, or Hemi-Fontan) is the next phase , and Sammy's had that already as well. The Fontan is the completion phase of the Glenn. If you're short on time, just read http://en.wikipedia.org/wiki/Fontan_procedure, specifically the "Indications" section. It explains why a cath is done prior to it, as well as why the procedure's used at all.
Your thoughts and prayers and positive energy really do carry us through. Thanks so much!
Comments (1)
We'll be headed into Boston shortly for Sammy's heart cath. Plan looks like this:
- Hotel tonight, pre-cath workup (xray, bloodwork, EKG, who knows what else) tomorrow at 8:30am.
- Hopefully done with that in 4-5 hours. If Sammy's up to it (and we are too), we might make a trip to the Aquarium. My folks will make it into town around dinnertime.
- Thursday - cath day. We don't know a time yet. Apparently they will tell us that tomorrow. Cath, I believe, should take 3-5 hours.
- Thursday afternoon/evening will look one of two ways: if the cath was simply exploratory and they didn't have to do any work AND it was early enough that they can observe him for a few hours after he wakes up and everything's fine, they'll send us home. If the cath was later in the day, they had to do work, or they want to observe him longer, they'll keep us overnight.
- Either way, we should be back home Friday afternoon, universe willing.
I'm a wreck. Jay stayed home today to help get ready because I'm just so overwhelmed, I don't know where to begin.
Please keep Sammy (and us) in your thoughts the next few days. We could use the positive energy. Thanks.
Sammy's heart looks and sounds great. We were concerned because he seems to get out of breath quicker and a bit bluer around the mouth when he's out of breath. Of course, he's a wild man who doesn't know how to slow down, but Dr. Brown confirmed that kids with the Glenn anatomy will do just that - turn blue, run out of breath - the bigger they get. Something about the blood flow (and increased need for it with exercise) - but that Sammy's body is doing exactly what it's supposed to. Doesn't make those wheezing attacks any easier on us, but at least we know that it's completely normal. Now if someone could get my kid to sit still for a bit...
(For the record, when I say "turn blue" - I mean his lips look blueberry-stained and he gets blueish around the mouth. If you didn't know what to look for, you might not notice it - but we do. I've heard post-Fontan parents comment on how "pink" their child looked, and I never understood it because Sammy always looked pink to us. It'll be bizarre post-Fontan to not have those darkish lips - I can only think that they'll look so pale!)
His tricuspid valve regurgitation is still mild, thank god. And no, he didn't take the EKG stickers the way I had hoped. Oh well. There was lots of crying and screaming and "I go!" pointing fingers at the door - but all in all, a good visit. We also got the okay to switch him from his 3x a day Captopril to his twice-a-day Enalapril - no more waking him during naps, no more packing his meds to run to the store - YAY! So now it's just Enalapril (which lowers his blood pressure so his heart doesn't need to work as hard) and baby aspirin.
We're on track for Sammy's cath sometime in January, with a potential for an overnight stay at that point (if they do anything internal besides check pressures, etc - he mentioned coiling off some of the collateral veins if needed). And then - Fontan sometime May or June. It'll be nice to have our summer to enjoy, instead of spending it worrying and with the surgery hanging over our heads.
I've emailed Dr. Brown a bit recently, and not to jinx anything, but he's really helped to calm my nerves about the surgery. I'm not looking forward to handing Sammy over again, but I don't feel the overwhelming dread that's been hanging over me the past two months. I asked about figures and survival rates and risks - the risk of a stroke is minimal, but still present with any intervention. The survival rate we had been quoted prior for this surgery was about 95% - a great figure, but it loops around in my head as "1 in 20 won't make it". That's too high for my comfort.
Yesterday, he clarified it for me - that rate also includes older patients (adults who are still considered patients at Children's because they've been patients since they were children). Apparently, the mortality rate is higher for adult Fontans and Fontan revisions, and since that's included in the 95%, the survival rate is much higher for children in Sammy's condition -
(Which, btw, is "healthy" - he called him "healthy"!!!! No medical provider - let alone his cardiologist - has ever called him "healthy" without a disclaimer (for example - "I mean, healthy, all things considered").
Anyway, he gave me a rate of "higher than 99%". Higher than 99%! That's absolutely fantastically wonderful! Again, not to jinx anything - knock on wood.
Sammy's still measuring in on the small side - 21lbs at 19 months - but no one seemed overly concerned. He's developing just as any other 19 month old should, and it's no surprise that he burns so many calories the way he just goes, goes, goes.
In other heart news, it looks like Jack is set to go home TODAY. He just had heart surgery on FRIDAY to repair his ECD/AVSD - it's Tuesday. That is just amazing. Go Jack!
Comments (2)
Sammy had his sedated echo today, and he's really quite loopy still. Since I know it'll wear off and that he's okay, it's actually kind of funny. It hasn't kept him from singing Diego or nesting boxes, his second favorite game (the first being taking lids off and putting them back on...and off...and on....and off...and on). He's one smart pumpkin.
He came through the echo with flying colors. Two of my favorite statements from his cardiologist: His right ventricular function is probably better than mine and His heart function is excellent - as good as any heart could be. When I asked him if he meant any regular heart or any surgically modified heart, he answered - any regular heart. So Sammy's heart is working just as well as yours or mine - it just works differently!
So his cardiologist was thrilled (as were we, of course). Sammy does still have a bit of a pinch in the aorta that's causing a bit of back-up (regurgitation) in his tricuspid valve, but it's not anything he's worried about. He expects that they'll do some work on it either during the pre-surgery cath or during his next surgery.
One of my other fears was alleviated. I've had in the back of my head that Sammy somehow might not end up being a candidate for the next surgery and would end up on the transplant list. Dr. Brown made it very clear that it's rare for children to not be candidates and that there are usually other problems that land them in that position. Sammy is in perfect condition for the Fontan. He didn't talk dates or even estimates of dates, and we forgot to ask if we could schedule it for the same time as little Ellie's so that we're all in the hospital together. I know Ellie's cardiologist chuckled at that one when Alicen asked him - Can't say we've ever had a request like that before!
We also learned that he probably won't be able to ride rollercoasters, but he will be able to get drunk and have sex. I love that our cardiologist humors us the way he does. He essentially told us that he'll be able to do pretty much anything any other kid can do. Whoo hoo! Dr. Brown agreed - my son is a rock star!
Another thing that was nice to hear - we met with the genetics counselor who has been following Sammy as part of a study. She believes, based on our family history and Sammy's CHD, that it was just a genetic fluke and not a predisposition for CHDs. After spending the last year and a half wondering what I could have done to cause this, it was nice to hear from someone who does this for a living that I probably did absolutely nothing, that his heart was just one of those things. Of course, I'll still wonder, but it was really nice to hear.
So we're home and exhausted. We'll be getting an event monitor over the next few days to record Sammy's heart rhythms the next time his heartrate drops. Other than that, I discovered that Ativan is fantastic for taking the edge off and that Au Bon Pain ham and cheese croissants fill this emotional eater's needs just perfectly. More importantly, I was reminded of this - there's no way in hell I could do this without Jay. I definitely think Sammy gets his rock star personality from his dad. :-)
Comments (5)
We had a cardiologist check-up for Sammy today. Everything's a-ok. If anything, our card is thrilled with everything except Sammy's weight gain (or lack of it - we had a few weeks of teething and reflux that made it tough for the monkey to keep much down). He said his tricuspid regurgitation is better than it was in October, and in October he had told us it was the best he had heard in Sammy EVER! So I'm thinking that was a good thing.
I also asked about the next surgery. Part of me wants to get it done with sooner than later, because I don't want Sammy to ever remember any of it, and the older he gets, the more he's understanding. The rest of me wants them to do it when he's like, 80. I know they do the Fontan as early as 18 months, but his card seems to think we'll still be in the 2-3 year range.
We have a running joke with his doctor - every time we come in, Sammy's got a different diagnosis written on his sheet. Technically, he's not HLHS, though they categorize him as such because he needs the three surgeries and will end up single-ventricle. On our last visit, he was labeled DORV (double-outlet right ventricle - even rarer than HLHS), and when his doctor asked us today what we wanted him to write on his sheet, I joked , "Mitral atresia." He laughed and said, "Yeah, that's my favorite, too."
Nothing like a little heart humor, right? I know there's a list out there - you know you're a heart-mom when... and I should add this: I know I'm a heart mom because the other day I was driving behind a car with "SVC" in the license plate - and all I could think of was "Superior Vena Cava."
(Seriously, though, his diagnosis is a combination of mitral atresia, hypoplastic left ventricle, coarctation of the aorta, malaligned ventricular septal defect (VSD), natural atrial septal defect (ASD). Who knew that someday I would know what all of these mean?)
The visits always leave me exhausted, like I've been crying for days and now I'm just wiped out. I don't know if it's the anticipation, the worry, the fear that something's wrong and we'll get wisked right from the office into the CICU, or the ultimate fear - that there's something really wrong and they can't do anything about it. Most of the time, though, I feel like our cardiologist is "patting" me on the head with his words, like Oh, sweet woman, he's okay. Really. Get some sleep, stop worrying so much and enjoy him for the great little boy he is.
Then we got home and he ate a ridiculous amount of avocado, let me chase him around the foyer, played piano, took a good long nap, read a book, crawled around some more, cruised around the furniture for a while and then ate some more. We snuck a walk in there, too, and even in the wicked cold, he stayed a lovely shade of pink. We went into this expecting a child who napped a lot, would be behind developmentally, would turn blue easily, and would likely have feeding issues. Instead, we ended up with the happiest baby in the world who, as we were told today, looks like he should be in a Gap ad and wears this mama out with all his energy.
Ok, enough gushing over how amazing he is. Knock on wood, kiss your kids a few extra times tonight, and be grateful for everything you have. I know we are - in case you couldn't tell. ;-)
Comments (1)
Let's see what's been going on:
Sammy's thoroughly enjoyed bananas and sweet potatoes. He's went back and forth on the pears, and the jury's out on the prunes. (Mama hopes he comes around to the prunes, because quite frankly, 2 1/2 days between poops just doesn't sound comfortable!) He much prefers to feed himself, and he's taken to scooping up his bottle and rolling it around until he figures out where the nipple is, and then spends the next few moments chomping down on it.
He smiles all the time. He laughs and carries on conversations with anything and anyone. He truly is the happiest baby I've ever met. We're fairly certain that he's teething, as he leaves behind huge long globs of drool wherever he goes while chewing on whatever he can grab and shove in his mouth. He's enjoying some tummy time again, and throws a bit of a hissy fit if we take him out of his Jump-a-roo or Exersaucer.
He had his post-op check-up today, and weighed in at a whopping 14lb, 3oz. We're just three weeks and 5oz from doubling his weight by his six month birthday. (Holy cow, how is he almost six months old already!?!?) His oxygen saturations are hanging in the mid-80s, and his heartrate hasn't dropped below mid-70s (and that's while he's sleeping). They dropped his Lasix down a little bit, and he's still on Captopril, baby aspirin and Zantac. Dr. Brown was very happy with his progress and gave us the okay to travel with him. (He even said Sammy could fly! Not that mama's getting on a plane anytime soon.) We've got two months until our next cardiologist appointment. TWO MONTHS! Whoo hoo!
So, here's to a mellow two months. Knock on wood!
Comments (2)
Because this poor kid hasn't been through enough already...
On and off since the cath, there's been blood mixed in with his poop. We weren't sure where it was coming from, the culture showed no virus, but it was there. His pediatrician didn't seem too concerned, but we were getting worried. Yesterday, which was the medical DAY FROM HELL (mammo for a supposed lump in my breast which showed nothing, the phone call with the date for Sammy's next surgery - which is almost a full two weeks earlier than I was planning on - and this), it got worse. The pediatrician made an appointment with the gastroenterologist on Thursday and wanted to see him this morning, just to "eye him over."
Yeah. Never made it to the pediatrician. Nothing like a DIAPER FULL OF BLOOD to freak a mother out and send her racing to the ER.
Turns out, after a long day at Childrens', our little monkey has an intolerance for milk proteins. The last few months of second-hand yogurt, ice cream and milk wreaked havoc on his poor little intestines - hence, the blood.
So this mama gets to completely cut out milk and soy from her diet. Sure, switching to formula would be easier, but I really believe breastmilk is best and I want to do everything I possibly can for him - even if it means forgoing cheese and lattes for a few months.
So - it's been fun over on this end. My poor little monkey.
Interesting tidbit - this time, this day last year, I was the only one who knew I was pregnant. While I sat around the living room, eyeing the test and waiting for Jay to come home, I wrote the following:
Dear baby,
There's one thing your dad made me promise: don't get pregnant before my birthday. I turn 30 on Wednesday. It's Monday, and there were two little lines on that little plastic stick screaming, "Happy birthday Mommy!"
Whoops.
I've been really tired the past few days. My period's been screwy the past few months, but I knew last month I got it on the 18th. It was early - I'm usually around the 24th, so this month I wasn't sure if I was due the 18th or the 24th or somewhere in-between. This morning I felt a little sick - it was different than the normal nausea - and I was exhausted in a way I couldn't imagine I'd ever be exhausted, so I decided to pick up a test on my way home.
Two little lines for something so incredibly huge.
I'm still trying to figure out a fun way to tell your daddy. We've been working around the house a lot the past few weeks, and we're so tired (though at least now I know the exhaustion isn't just because I was painfully out of shape!). I was thinking about hitting up when he walked through the door, telling him not to get mad, but that I have another project for him... and this one's kinda big.
I know this is one project he won't be complaining about!
I've got two hours until he gets home, and I'm bursting at the seams. Ready for nap, but trust me - bursting at the seams.
Holy crap. We're having a baby.
Love,
Mommy
(P.S. It still doesn't feel real.)
And you know what? Sometimes it STILL doesn't feel real. :-)
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Hey.
Sorry I've been quiet - it's been a rollercoaster week.
We went to Sammy's cardiologist appointment on Tuesday. It was rough for me - I didn't want to be at Children's. I was certain we were going to get a date for Sammy's next surgery, and I wasn't ready for that.
Instead, our cardiologist ended up doing an echo on Sammy because his pulse in his legs was weak, and found that there was scar tissue from when they tried to fix the coarcation during his first surgery. It's causing a bit of a back-up in his aorta. It's not a huge problem right now, but his cardiologist wants to take care of it as soon as possible.
So Monday we're getting admitted and he'll have a balloon catheterization and monitoring on Tuesday (during which they're going to try to stretch the scar tissue out and open the pathway), and hopefully, as long as things go well, we'll be home Wednesday.
Mama was totally not expecting that at all, and I go back and forth between feeling okay with things (my baby is sick and this will make him better) and being really upset about everything (they have to do work on his heart). Some days it's hard to look at him without my heart breaking a little. (I always feel bad using that phrase now.) I think it's part of being a parent of a child with a CHD - you're kind of always holding your breath a little, even when things are going well. And when they're not so good, it's even scarier. We had such a good run, and I was able to feel normal for a little bit, and it felt good. Now I feel like someone slammed me with a reality check, and toss in there that he's been off the past few days... well, worrying so much is just exhausting.
We did get a sense of when his next surgery will be - they're looking at scheduling for the end of July. We want the same surgeon who did his first surgery, so they're going to call us with a specific date. Part of me is afraid of having that date hanging over my head; the rest of me wants to be done with it already. I want that space between the 2nd and 3rd surgeries to feel a little normal again.
So on Tuesday, if you could send some of that amazing energy and prayer you all pulled off last time, it would be most appreciated.
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Hi all -
I know it's been a while since I posted. We've been trucking along - he's still measuring big and at yesterday's appointment, they bumped us up into the mild polyhydramnios range (too much amniotic fluid). No worries just yet, though I'm certain they'll want to revisit the idea of induction at this Wednesday's visit.
Otherwise, we've just been trying to get ready. I'll be 38 weeks on Wednesday, with Tuesday being my last day of work. His nursery is almost done, our hopsital bags are packed and I've been insisting that every little twinge is a contraction. I'm ready to be done.
You may have seen the news about baby Grace - she was the first in the world to have a certain in-utero procedure for HLHS. (We weren't candidates for this particular surgery.) We were lucky to meet up with Angela, her mom, before Grace was born, but didn't get to see them after. Baby Grace is doing FANTASTIC and was sent home after her Norwood in less than two weeks, which is INCREDIBLE. Our friends Alicen and Chris had their baby girl, Ellie, who underwent her Norwood about 10 days ago. She's had some minor setbacks, but is otherwise doing fabulously, and should be going home soon! We wanted to see them yesterday, but I'm still fighting a yucky upper respiratory infection, and little Ellie can't risk getting sick. If you could send some love and prayers to these families, that would be wonderful.
So we're down to a whopping 17 days until his due date, and then it's our turn. Come out, come out Sammy - any time! We're ready to meet you!
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We had another ultrasound & OB appointment last Friday (1/6/05). Sammy's still large - measuring in the 80th percentile at 5.1lbs. I gained a whopping one pound since our last visit, and learned that my amniotic fluid is on the high side of normal. This may not mean anything for now, but they want to monitor it because it could make my uterus go "Wheeee! I'm at the right size to pop this puppy out - let's go!" a little earlier than it should.
Speaking of earlier - they have me at 34, instead of the happy 33 weeks I've got on my calendar. So now we're looking at February 22nd, with a possibility of my uterus handing Sammy an eviction notice even earlier.
And so we move into weekly visits and the countdown speeds up a little, though I know we have such little control over when the little monkey will deem us worthy of his presence. Still - ack!
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I just got up from a looooong nap. I don't know if it's just the third trimester or everything else, but I'm so tired, all the time.
We had our second fetal echo in as many days. This was the official one at Childrens' Hospital in Boston where Sammy will have his first surgery, the Norwood.
The staged reconstruction for HLHS requires three operations. The first is the Norwood procedure, usually performed in the first week or two of life. In the Norwood procedure, the pulmonary artery is sewn to the aorta. This allows the only good ventricle, the right ventricle, to pump blood to the body rather than the lungs as it normally does. In order to get some blood to the lungs, a small tube of Gore-Tex is sewn from the innominate artery (artery to the right arm and head) to the pulmonary artery. This a major and very complex surgery, with the babies often spending several weeks in the PEDIATRIC INTENSIVE CARE UNIT after the surgery. When the child leaves the hospital, he or she will be mildly blue, or cyanotic. (from The Heart Institute at Albany)It was a good visit, sort of. We love the pediatric cardiologist at Children's too - Dr. Brown (apparently everyone loves him - all the nurses in the CICU giggled when we mentioned his name).
He told us what we heard yesterday - Sammy's heart is pretty much the same as before, just a larger version of it. He arranged a tour of the CICU for us, so we got to see the facilities as well as heart babies who had just gone through surgeries. We had seen pictures online before, so we handled it well - we saw one little boy whose chest was still open. It was a bit much to see THAT in person, but Sammy's going to go through it and I'd rather be prepared for what we're in for. The nurse couldn't tell us what was wrong with the little boy, but she said he was the most serious case they had right then. She was great - showed us what all the tubes and lines were, and told us which ones Sammy would likely have. She answered a lot of our questions, from pumping to breastfeeding to leaving toys with him when we're not there to staying overnight to well, everything we could think of.
When I asked if there were any HLHS babies there right now, she laughed and was like, "Of course. That's what we do here - we're the HLHS center." She said sometimes she needs to step back and realize how rare it really is, because they work so closely with so many HLHS kids all the time. It was really good to be somewhere where they know everything about his condition - to the point where it's routine for them. It actually felt, for the first time, like we were normal - we weren't a special case or an exception.
I think we both felt that we're in really good hands there. Not that we're looking forward to making that home for several weeks, but everyone seems so wonderful and the place is so well-equipped for little heart babies... I guess there's a reason why people travel from all over the world to take their children there.
32 weeks on Sunday, bi-weekly OB visit next Friday... and the countdown to his arrival begins.
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How am I 8 months pregnant already? We met with the pediatric cardiologist we loooove today. He wanted to see us on his dime - no charge to us or our insurance - just for his own education. The woman who did our echo couldn't get over what a wiggly worm Sammy is - seriously, he's all over the place!
I had some brief meltdowns - mostly when I watched him punch and kick and suck his thumb and then did the dumb thing of starting to think about how close his birth was and how the ability to keep him safe and happy and without pain was going to be out of my hands soon. I think most mothers have the innate desire to protect their child - and as his surgery and all the recovery with it draws nearer, the more difficult it is for me to understand that it is all out of my hands and that there's only so much I can do to protect him. It just kills me to think about how his world is going to change once he's here, how much he's going to face, how unfair it is to this little being who has done nothing to deserve any of it.
Anyway - according to Dr. Johnson, not much has changed. On a good note, his aorta is really large for an HLHS kid, and the left ventricle still seems to be in the same ratio with his right (about 1.6:1). He told us again that we have the best possible scenario for HLHS - but he reminded us, in his gentle way, that even with the best scenario, it is still HLHS. Another fetal echo tomorrow at Children's in Boston where we hope to get a better sense of what we're looking at for surgery & recovery, though nothing is a sure thing until he's here and they know for sure what they're up against.
Bath time and nap time for mommy. Energy levels are low anyway - apparently that happens in the 3rd trimester - but doctor visits sap everything out of me.
Hope everyone had a wonderful holiday.
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So we trekked into Boston today for the start of our bi-weekly visits to the doctor. Ultrasound first and then a visit with the nurse practioner.
What we learned today: I'm carrying a mon-stah! The King Kong of monkey babies!
Baby Sammy, at best guesstimation, at just under 31 weeks, is approximately four and a half pounds! Of course, that's a guess and it could go 13oz in either direction, but holy crap, he's huge. He's measuring almost 2 weeks ahead, and I'm trying not to imagine what 13oz in the wrong direction would mean. Eeeek!
He's also now affectionately known as my little buckaroo, since they confirmed what I already knew - he's one hyper child. (My coworkers have commented on my rolling belly in meetings!) He's also decided, much to our happiness, that breech just wasn't for him, and has taken to hanging from my ribs like they're monkey bars. I had figured as much, though, since about two weeks ago I could have sworn someone shoved their hands in me and rotated all my insides at once, and I've been feeling swift kicks to my ribcage more often than not. Head down, just where it belongs. Good boy.
Heart looks the same - but we got more of a glance-over than the intensive study we'll get next week at the pediatric cardiologist. We're hoping to get a tour of the NICU, see where he'll have his surgery and hopefully meet some of the surgeons. We met today with a woman from Childrens' who was wonderful and really put me at ease about the possibility of breastfeeding. It gave me a little hope, at least, and I now know that they're very eager to feed little monkey all the milk his Mommy can make!
(Holy crap, I've got a big bebe in my belleh!)
As for mommy - I gained a much more appropriate 4 pounds this month - much better than previously, and now I can attribute a chunk of it to him. The doctor said the cramping I've been having is "good practice" and seemed happy about it. I held my ground the best I could and really pushed to go to my due date before they induced me (previous conversations had made mention of scheduling an induction a week before). I think I might just win that battle. Yay mommy!
So, we head into the holiday break with some good news. I'll drink a rum-free, low-fat eggnog to that!
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Highlights of the long day at the doctor:
- Samson is large - in the 78th percentile - and weighing in at about 2lbs9oz.
- He's breech, with his feet up by his head and his butt down at the bottom. Don't ask me - I don't think it sounds very comfortable either. He's running out of room, which explains the minimal movement I've been feeling lately. I'm just hoping there's still enough room for him to find his way back around on his own.
- We could only get a peek at his face through his feet, though we were able to see one eyeball. With the iris and everything. It was really pretty freaky.
- His heart looks about the same, but this was just a basic ultrasound and not an echocardiogram. Still, we were able to see the smaller left ventricle and the large VSD.
I'm ignoring a whole slew of things about the delivery that I can't and won't deal with right now. Results of the blood sugar test thing should be in tomorrow - I had to drink some orangey-soday thing, and now I want some Slice. If I wasn't so upset at the weight gain, I'd indulge in some ice cream, in case it's the last taste I'll be able to have for a few months. Non-stress test and another echocardiogram in 4 weeks. Comments (1)
We're home. From where, you ask?
The hospital. The fun never ends!
I started having these weird sharp pains about 7 last night - bad enough that I was lightheaded and out of breath. They completely knocked me on my ass! They were nothing like the ligament stretching from earlier on, but there seemed to be little rhyme or reason as to the timing, so I figured I'd see if they went away. If they hadn't disappeared by my usual 4am wide-awake date with Cops, I'd call the doctor.
So they didn't, and by 5 we were on the road to Boston. I joked with Jay that we should enjoy this rush to the hospital, because if they weren't contractions (which I, in all my first pregnancy paranoia, was terrified they were - and so did the OB on call), they have plans to induce me before my due date and we might not get to experience that "Holy shit, we're having a baby!" panic as we race down the highway. :-)
They had me all hooked up to monitor his heart (for four hours!) and they ran a bunch of tests, all of which - thank god - came back fine. No dilation, no early labor, just a hyperactive baby playing trampoline on my cervix. Really - that's the best they can figure. He's a very busy little monkey, and some women (of course, if it's a minority, I fall into it) develop a very sensitive vagi-cervi-something or other, so the baby's movements can trigger sharp pains and spasms. They're not sure, though - all I know is that this little monkey has been crazier in the last 24 hours than I've ever noticed before.
Still, better safe than sorry. I'll take a "We don't know for sure what it is, but we know it isn't labor" over any of the more awful things they could have told me. I was having nightmare visions of bedrest, IVs and other terrible things, but they did a fetal fibronectin test and according to that, we're labor-free for at least two weeks. Considering I'm only 25 weeks, I'd hope labor's far away!
So I'm home to rest today with orders to come back if they don't subside or if they get worse. A warm bath, cheesy court TV and a comfy blanket are all on the afternoon agenda. The excitement never ends over here, does it? Geesh.
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We're home!
Things went as well as they could have at the fetal echo. They confirmed the HLHS, which we figured. My greatest fear was that they would find something else - which they did. When the cardiologist told us Sammy also had a large ventrical septal defect (a hole between the left & right ventricle), I started crying. He jumped in to let us know that this was a good thing! Apparently, it allows blood to flow out of the left ventricle and into the right - without it, the left ventricle would be capable of very little to nothing.
(Mind you, I could be messing that up - Jay understands this a tad bit better than I do. :-))
The left ventricle is larger than they normally see in HLHS - it's about 60% the size of the right ventricle. Considering that some babies are born with no left ventricle, we're actually in a good position. He also upped the 5-year, 3-surgery survival rate from the initial of 60-70% to 85%, and said that with what he saw today, we've got one the best scenarios we could have with HLHS.
Whew.
I found out some things about the delivery/after that made me less than happy, but I need to remember that at that point, the best hands for him to be in are not ours, but the doctors. It makes me sad that we'll likely have time to kiss him and hold him once before he's whisked away and hooked up for the prostaglandin, but they did say I should be able to be rolled up to see him 2-3 hours after he's here. Not ideal, but I need to remember that it's for the best in the long run, right?
And through all the chaos and stress of the day, 1) Sammy was ALL over the place in the 3 hours he was being poked and prodded and scanned, but we still managed to snag a 4-D picture of little monkey (I'll scan it in later; we're relaxing at Su's right now), 2) Jay was able to see monkey kick from the outside!, and 3) I got me a prescription for Zoloft to help knock the anxiety down a few notches. Now it's naptime until Su gets home, at which point we get to take her out to dinner to celebrate that she passed the bar and is now officially Susannah Esquire.
Whew. Next appointment in 3 weeks, and that's just an ultrasound and an OB appointment. Next echo at about 32 weeks. Thanks for all the well-wishes and positive energy - I really think it's helping!
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I am so angry right now.
When we left the amnio, they gave us a manila envelope from the evil genetics counselor. Just today I found the energy to open it.
In it was a brochure, "Your baby has a problem...." with with some basic info. Fair enough. But then there was a brochure about congential heart defects - FROM 1993. The section on HLHS is outdated and states that the outlook for babies with this is poor "unless a heart transplant can be performed" No mention of the Norwood procedure. Nothing about the surgical options they encourage instead of a transplant. And absolutely nothing about how, in the past two years, the outlook has gotten increasingly better - anywhere from 60-80% survival rates (like this article). It was put together by the National Society of Genetic Counselors. Nothing, nothing in this packet from the American Heart Association.
But it gets better.
There was a book called, "A Time to Decide, A Time to Heal" - and the whole book is about terminating and dealing with that grief. Even the few pages in it about continuing the pregnancy is a story about a couple that made it to term and lost their baby 33 days later. What the hell?!?
Don't get me wrong - I understand monkey's in a bad spot. I know he's got a tough condition, things are going to be scary and uncertain. But for chrissakes, would it have been so hard to find POSITIVE stuff about the recent advancements in technology that are making it possible for these kids to live a fairly normal life? Why does everything have to be so damned NEGATIVE?
You know, maybe this is good. All my anger about this can be directed at her and her young, naive attempts at giving us information. I swear, she's been determined from the start to have us end this pregnancy - from the statement that it "looks like he's got Down's Syndrome" (which he doesn't) to her remark that she's yet to see a woman who had a positive amnio for DS keep the baby to this whole big book about how to deal with making the choice to terminate.
My god. If nothing else, it's pushing me to be positive JUST TO SPITE HER. I'm not a vicious, mean person by nature at all, but I wanted to rub those non-DS results in her face, and I can't wait to have a nice long chat with her about sensitivity and bedside manner WITH MY THREE YEAR OLD SON sitting next to me.
We'll show her, Samson.
Sorry. I'm just really pissed off.
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We spoke with the pediatric cardiologist yesterday. I want to keep him in my pocket for the rest of the pregnancy - he's that wonderful. He just wanted to touch base and see how we were holding up, and he was really happy to hear how we were handling things. He also said that (and this is where I screw up all the big, important doctor-words) Sammy's aorta is larger than what they see in children with HLHS, so they're not sure if it's an uncommon form of HLHS or if it's AVS with an atrophic left ventricle. Either way, Sammy will 98% likely need the same three surgeries. BUT, he said, the left ventricle has been known to grown in the 2nd half of the pregnancy. It's rare, but it has happened.
So send all your left-ventricle-growin' vibes to the little man in mah belly!
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Wanna hear an embarrassing story about the baby? Jay's laughing and telling me monkey's going to punch me in the bladder for this (I have to pee reeeeeeeeeeeally badly and I'm too lazy to get up from under the warm blanket):
We had a whole entourage in the room for the ultrasound. She showed us his head, his spine, his arm... and then she headed south. And there was his boytoy - literally, because his hand seemed to already be playing with it.
Everyone started laughing - and wouldn't you know it? Little monkey turned his face away from the camera in embarassment. My poor little boy - this was not how I imagined his first discussion about [cough] enjoying his body - I figured we had years and years before that!
Finally, we got a good shot of his face. He looked right at us, removed his hand from his mouth, and stuck his tongue out at us.
I kid you not. I have witnesses!
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I'm home! I made it!
Really - everyone who said the anticipation was the worst part was totally right. Still, I took half an Ativan, and sure, my uterus went into seizures when the needle poked through, but Jay had me count backwards with him, and that always works for me. I didn't cry until it was over and I saw the picture of monkey on the ultrasound screen. He was okay and I was okay, and that was emotional enough for me.
Even weirder? She showed me the vials of amniotic fluid, and I was like, "Oh my god - that was touching our baby!" It sounds gross - but it had touched him, something we won't do for months. Yes, I got sappy over a vial of what's essentially baby pee and other gook. :-)
Now the waiting game begins.
I know you're dying to know the name, but that's such a long post and I'm so tired. Nap first, and then the name. I promise. :-)
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We're home, and it's not good.
The EKG showed that little monkey has Hypoplastic Left Heart Syndrome. Essentially, Hypoplastic Left Heart Syndrome (HLHS) is "a condition in which the left side of the heart is underdeveloped, is rare, but it is the most serious type of congenital heart disease. With this syndrome, blood reaches the aorta, which pumps blood to the entire body, only from the ductus, which then normally closes within a few days of birth. In hypoplastic left heart syndrome, the baby seems normal at birth, but as the ductus closes, blood cannot reach the aorta and circulation fails."
Essentially, a baby with undiagnosed HLHS that is not caught immediately after birth likely will not live past three or four days. Because we know about it early, it means planned heart surgery after birth, another heart surgery at 4-6 months and another at 3-4 years.
Staged palliation for HLHS is one of the great achievements of congenital heart surgery in the 90's. In what used to be a uniformly fatal disease, consider the following: Survival following a Norwood operation is around 80%, following a bidirectional Glenn operation around 100%, and following a Fontan operation around 95%. Overall, survival at 5 years of age is around 70 - 75%. Most patients who get through the three stages do quite well: Very few are on medications, almost all have normal growth and development, and very few have any exercise or other kinds of limitations.
This means I will need to give up our small midwife center in exchange for a large hospital in Boston. Clearly, we need to do what's best for the baby. The hospital is connected to the Children's Hospital. Our pediatric cardiologist was very supportive; he does work with CH and said he would tell a couple in Arizona with this to fly to CH for their care. Apparently, we're lucky to be so close to such an amazing hospital. (Interestingly enough, CH was featured in a Newsweek article for this exact syndrome, though the pediatric cardiologist didn't think we'd be candidates for this experimential procedure. He's taking our tapes down to CH this week to share with his colleagues.)
Another concern: I've got to go for an amnio this week. Should that turn up Down's Syndrome as well, the baby will not be equipped survive after birth, let alone survive the surgeries. We're still trying to deal with that possibility. If that's the case, we might have to terminate the pregnancy. Even if I carried him full-term, he wouldn't survive. We'll know later this week.
If it comes back fine, then the rest of the pregnancy should be okay. It's once he's born that we start facing the real problems.
Needless to say, we're devestated and are trying to cope with the information and emotional overload of the day. My parents are coming up tomorrow; Jay's mom will be here this weekend. If we seem distant (or needy), you know why.
I'm trying to remain hopeful, but I think we're both just so exhausted that we can't think straight. I appreciate all your good thoughts for today; I wish I had something different to share.
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The ultrasound wasn't as happy as we were hoping for. We now have an appointment Monday with a pediatric cardiologist for a fetal echocardiogram.
It'd just be really, really nice to go two weeks without some sort of test. I'm tired of hearing, "We're worried about...." - this time, his heart. Something about mitral valve and something else - it all went over my head. Luckily, Jay absorbed it all, but I still can't process it when he explains it to me.
Our genetics counselor still sucks. I think she gets a bonus for every amnio referral she makes, because she's pushing us real hard. She called this afternoon, after the ultrasound, and within three minutes I was sobbing. I had to hand the phone to Jay; "The signs are pointing to Down's Syndrome" just wasn't something you should say to someone over the phone. The fetal specialist said it could be a sign, it could be something else. They should have left it at that.
Maternal fetal specialist. Genetics counselor. Pediatric cardiologist. Any other specialists we should know about?
We got a good picture of him, his profile. He's beautiful - little lips, nose, hand. But for all that I love in it, it also makes me sad and scared to look at it. I want to believe it's just a series of random problems - the single umbilical artery, the positive quad panel, the concerns with his heart - but I just don't know what to think. I want to stay positive, I want to feel safe loving him, I want to hope that maybe they just couldn't get a good picture today, but I'm just scared. I'm scared and I'm tired and I'm tired of worrying and I just want him to be okay.
And to think - my biggest concern was that I'd gain lots and lots of weight and that I would never be able to go to dinner alone with my husband again. It all just seems to silly now.
Yeah... so that's where we're at.
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