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'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)
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.
I know I haven't updated in a while. It's been an eventful few weeks, unfortunately.
First was the trip to the ER for the bloody stools. Turns out, Sammy is both milk AND soy protein intolerant. I had spent three weeks dairy-free, but he wasn't getting better. The GI determined he must also be soy intolerant, and since EVERYTHING has milk or soy in it, I had to give up giving him breastmilk. We switched him to Alimentum. I'm disappointed, but he's MUCH better now, and that's what's important, right?
Three days after that ER visit, we ended up back at Children's. It was perhaps the worst afternoon of my life. Without reliving too many details, Sammy's sats (oxygen saturations) dropped and I couldn't wake him up. He opened his eyes just as the 911 operator was going to walk me through CPR. They took us to the local hospital by ambulance, but they were having a hard time keeping his sats above 60 without oxygen, so we took another ambulance ride - through awful rush hour traffic in Boston - down to Children's. We had a three-day stay, where they blamed it all on an upper respiratory bug and dehydration.
And this Wednesday, July 19th, he goes in for his second operation, the Glenn. This is by far harder than the first time around. He's a major part of our lives now. He laughs and rolls over and giggles and has his own little personality. I should be writing about all the amazing things he does, how you wouldn't know he had a heart condition by the way he looks (he's almost 14 pounds!) or the way he acts (right on target for his age, not delayed at all!), but right now, we're consumed by the idea of having to hand him over to the surgeons again and all the fears and worries that go along with that.
So please - keep him in your thoughts and prayers over the next week. We thank you for your love and support in advance.
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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I'm 30 weeks on Sunday and starting to feel even more overwhelmed than I have been. One site summed it up: you hit a point where to stop counting how far along you are and you starting counting down how little time is left.
And then you panic.
We have yet to take a childbirth class. Pickins are slim - who knew that people sign up for those things at five months? Not me. I imagine if we had been seeing the same ob over and over, it might be different, but I feel like we've sort of been left to our own devices. And $200 for a class? Are they crazy? Don't they know we have all this stuff we need to buy for this little bugger?
Pediatrician? We should have been interviewing one of those, but I'm lost. He'll have a pediatric cardiologist and he'll see doctors at Childrens for quite a while. Where does a local pediatrician fit in? How do we even begin to find one that works with babies with serious heart conditions?
I can't stay on top of my planning and grading for school without getting completely wiped out. Where does all of this fit in?
I'm starting to think about packing the hospital bag. While I find lists of what to bring for the delivery and discharge, I have no idea what life looks like for us afterwards. It's not like we don't live close enough (45 minutes) that we couldn't go home and get stuff, but I don't know that either of us will want to leave the baby at any point, especially to go that far. I know we have friends and family who can do it - but I wouldn't even know what to think about what we might need. My brain just can't process it. They told us to expect to be there for 2 weeks - are we staying at the hospital? Ronald McDonald House? A hotel?
We've decided not to have a baby shower. I'd rather do something small when he's home and stable and through the first surgery. Little by little we're accumulating the things we need, but I'm in internal-freak-out mode. What if he comes early? What if we don't have the car seat installed? What will we bring him home in? We don't have anything warm! When do people do all these things? What if I don't get the birthing class done before he makes his appearance? What the hell am I doing?
I know that it is what it is, and everything will come together - but I'm a planner. I like knowing the items on the list are crossed off and we're prepared for anything. I just feel so... out of control. Overwhelmed. Nervous. I just don't know what to expect, and I don't handle that well at all. I wish I could get my brain to focus, but it just doesn't seem to want to.
I feel like we're outsiders - there's this whole world of pregnancy, and we don't fit in. Most of the traditional stuff doesn't apply to us, and there's so little out there that does. I've given up reading most things - it all just makes me sad.
What I really need is a glass of chardonnay. How nice would that be?
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Some days are tougher than others. Today is one of those days. Hell, it's been a whole lot of those days all squished together.
I'm angry that what's supposed to be one of the happiest times of my life feels like a black hole instead, and I'm not sure how to get out.
I hate that I'm not enjoying being pregnant, but I'm not ready for the next step.
I'm scared that if I'm hopeful, it's going to kick me in the face in the end, and then what do I do?
I'm angry that I feel like I'm one of the few people being realistic and that I can't snag and hold on to the hope everyone else seems to so easily embrace.
I'm sad that I'm not excited, and I'm angry that I feel like I'm taking away that excitement from the people around me.
I'm terrified of getting prepared and coming home empty-handed.
I feel like someone stole my rose-colored glasses and is playing a mean trick on me, hiding them where I can't find them. I'm terrified of losing that part of me that always managed to see the bright side of things. That's always been my favorite part of who I am.
I feel guilty about all of this, because I'm afraid it's going to transfer to Sammy, and none of this is his fault.
I'm tired of crying, but it's the only thing I seem to do well lately. Ask Jay - I have it down to an art form.
I'm afraid people think I'm overreacting, but I don't know how to let go of all of this. I've tried. Trust me.
So there you have it, in all its cheery condensed form. Somehow, now, I have to face an assembly of students. Happy Monday.
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