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
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 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)
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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The last results from the amnio came back today - no DiGeorge's Syndrome. YAY!
Fetal echocardiogram, ultrasound and ob appt, all squished together on Friday. Ick. I just can't wait for it to be over with. I'm dreading finding out something else in the echo. I'm just ready to have a secure sense of what we're facing, especially now that the amnio cleared up a lot. This wait game is killing me.
Speaking of wait game, let's pause for a moment to discuss the ridiculous weight gain. Holy mother. And I eat really well, too! You'd think I'd be drowning my fears in ice cream, but that's not the case at all. Sure I spent the first few weeks on "couch rest" - but really, almost a pound a week? Yeah - do the math. What the hell? So we're trying to be more active - walking daily, yoga in the morning. So what if we only started on Sunday and it's only Tuesday - it's a start! It won't reverse the hell that is my hips, but maybe it'll slow down the rest from here on.
Besides, they want him to be as large and as heavy as possible at birth - it'll help him through the surgery. If momma needs to gain a little bit more to help out with that, well then - pass the 'taters.
In the meantime, I'll try to ignore the fact that my ass is now wider than the rest of me. Oy. There will be plenty of time to get back in shape after, right? And some women DO gain all the weight early on and then slow down... Sure. That's what's going on. Though I definitely find myself giving the evil eye to skinny, non-pregnant women I see on the street. Grrrrrrrrrr.
It's for a good cause. It's for a good cause. It's for a good cause. And I just need to tell myself that I still weigh less than I did in college. A baby is worth the weight a hell of a lot more than the beer ever was.
Oy.
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Full amnio results are back - he's 100% clear of the trisomies!
Wooo hoo! Waiting on one more call - the 22q11 deletion. After that, we focus 100% on his heart - and maybe, just maybe, we'll get to go three weeks without a doctor's visit, EKG or some other random test.
But yay! None of the trisomies are present. Can I get a "Waaaaahooooo!"?
My mom called me this morning. A friend of a good family friend is a deacon, and there was some grand meeting of the 60 or so NY deacons this past weekend. Apparently, they had prayer time just for Samson.
Holy absolutely crazy, batwoman.
My kids are all focused today, the vomiting thing that took over my tummy yesterday is gone, this Hershey kiss tastes awesome, the kids are finally starting to comment on how big I'm getting, and we may never have to deal with the icky genetics counselor again. Way to go, Monday!
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We got the preliminary amnio (FISH) results back, and they're negative for Down's Syndrome and the other defects we were concerned about. These results are 98% accurate; we'll have the full results back in about a week. I feel like 98% of a weight's been lifted off our shoulders - there's still something else they're looking into (something called 22q11 that we don't even know much about yet) - but yay! 98% certain there's no trisomy 21, 18 or 13! Yay!
Whew. Now we can focus on his heart.
Oh, and little Samson's definitely 100% a boy!
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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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