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
Wow - I haven't updated since Christmas? Bad mommy!
Let's see:
Sammy turned 4 in February. He had a wonderful party with lots of his little friends at a local indoor playground. He's still in preschool, and will start pre-K in the fall. He's really started some serious reading, which is a blast! And he started Tae Kwan Do in May. We're struggling a bit with channeling (and managing) his energy, but otherwise, he's a great little kid!
Back in April, he had a checkup with Dr. Brown, his cardiologist. I was worried about his mitral valve regurgitation, especially since we had the emergency open-heart in September for the dislodged closure device. But Dr. Brown said his regurgitation was the best he had ever hear it! So we go back for an echo in October, and then if all looks good, he moves to yearly visits. Crazy to think that four years ago, he was on weekly and monthly visits!
Thanks for checking in on us. :-)
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How can you not smile at this picture? Does it get anymore typical boy than this? One of his favorite things to do is "jumpy cushions" - taking all the cushions off the couches and throwing himself (often with a twist or a special flop) onto them on the floor.
So full of life and energy and joy - we are truly blessed.
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I'm sorry I never updated after the last visit! The long and short of it is this: Sammy's just going to turn blue until the fenestration is closed. Of course, his sats were in the 80s in the office (not the high 60s/low 70s we see at home), but his heart function is great and his mitral valve regurgitation is still mild, so his cardiologist wasn't concerned. It could potentially be something they could only see with a cath, but none of those things were worrisome enough that it would prompt a cath any sooner than his fenetration-closing one. He did say that we'd likely do that sooner than later, so I'm anticipating late spring/early summer.
I haven't been sure how to handle the whole Santa thing with Sammy, but now that he's old enough to get excited about things, the idea of Santa inevitably wiggled its way into our house.
This morning, Sammy woke up in a great mood. I snuggled him onto my lap and asked him if he knew what today was. We talked about it being Christmas Eve and how Santa would be flying his reindeer to all the houses of the little boys and girls and leaving them presents under the tree. We talked about the presents he bought for the little boys and girls who might not have presents, and that Santa picked them up at a very special place, wrapped them and will bring them to those little boys and girls. He was very excited about the little boy opening a Little Einsteins laptop that he bought for him.
Then I asked him what present he wanted from Santa, and of course, his answer was, "Drums!"
Jay and I bought him a replacement drum set for the one he demolished, but as we're traveling for Christmas, we weren't going to bring it with us - instead, we were going to give it to him when we got home. I explained that drums were very big and that Santa might not be able to fit them in his sleigh. I asked him what other instruments he may want from Santa (we bought him a little play electric guitar and a "Sammy-sized accordion", as well as a few small instrument ornaments he's become enamored with).
As we sat on the floor, Sammy buried his face in my belly and said in a tiny, sad voice, "But I really want Santa to bring me some drums."
So we went to the window, opened it up and peered into the sky to see if we could see Santa. Sammy wanted to ask him directly for some drums. We looked into the grey morning skies and I explained that Santa was still at the North Pole getting ready for tonight. Sammy decided that we both needed to call Santa's name "fortissimo!" so that he could hear us from so far away. He counted off - "1, 2, 3!" and we both called to Santa. And then, in that same small voice, he said, "Can you please bring me some drums?"
I'm guessing that tonight, Jay will be setting up a small drum set at my folks because as much as this is about Sammy, it's even more about me wanting to see the look on his little face when he wakes up tomorrow and sees the drums waiting for him under the tree.
Merry Christmas everyone!
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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.
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Sammy had a great holiday! He learned, much to our chagrin, the concept of "presents" and constantly asked, "More presents, yeah?" Such is life with doting grandparents, I suppose. :-)
He's becoming quite the talker - since my last post where I worried about the fact that he wasn't talking, he's now saying 8-10 word sentences on a regular basis. He seems to be a big fan of "I Spy" and even said to me today, "I spy with my little eye... something blue? Yeah?" And sure enough, there was a blue house, complete with (apparently) a "black cat who's sad... yeah...he crying". Who knows where this stuff comes from, but it's a heck of a lot of fun!
I've put off posting about it because, well, denial is such a happy place to live, but Sammy's pre-Fontan cath is February 7th. I think I'm dreading the pre-cath workup more than the cath itself. The thought of them drawing blood from him makes me dizzy. We have the pre-cath works on the 6th and the cath on the 7th, and they may or may not keep him overnight for observation. Then the next step is scheduling the Fontan, which from conversations with his cardiologist, looks to be May or June.
So, it'll be an interesting couple of months, but I'm looking forward to being done with all of this already, and I'm looking forward to a summer with Sammy without a surgery hanging over our heads. I'm grateful that he'll be young and hopefully won't remember any of it at all - I just hate that he's going to have to go through it and there's not a damn thing I can do to ease any of it for him. Blah.
I should end on a good note, right? How's this for some mama bragging: Sammy can name about 20 instruments and can name almost all of those simply on sound. He's practically got his own full orchestra, complete with the trumpet, clarinet and piano he got for the holidays. He loves music and strums his guitar while singing Dan Zanes' "Malti". He can count to fifteen (and understands the concept of numbers), knows all the major colors (blue, red, green, black, brown, white, pink, yellow, orange, purple), knows most of the basic shapes (square, circle, diamond, triangle) and understands most of the five senses and the body parts associated with them ("I hear with my ears! I smell with my nose!"). Not too shabby for a kid who's not even two, eh?
You have GOT to be kidding me.
Wow - has it really been three months since I last updated? As always, Munchkin man is keeping us busy. He's non-stop energy! And the talking - oh, the talking!
Cuteness, for our records and so you can all gag with the sappy mommy-ness of it all:
- He's taken to forming 3, 4 and 5 word sentences now. His favorite thing is to ask, "Where did (fill in the blank) go? Maybe... over there? Maybe... in mamadada room? Maybe... downstairs?" He taps his little finger against his cheek while saying, "Maybe..." and then he pauses, as though he's giving real thought and consideration to where whatever it is might be.
- Playing hide and seek, usually where he's the one hiding and we check the most ridiculous places for him ("Is Sammy in the... garbage can?") - and he answers with this tiny little, "Noooooooooo" from wherever he is.
- "Oh no... toes! Not the toes!" He lifts his foot up and wiggles his toes at us, and we scream in faux-panic. He falls over in fits of giggles, all while trying to wiggle his toes at us and waiting for the screaming. Not sure why it's so funny, but it really, really is.
- Blues Clues. Anything that's the shape of a pawprint or handprint is suddenly "Boo clue!" Happy Monster Band. Mickey, Minnie, Goofy, Donald. And unfortunately, STILL Dora. (Speaking of the Mickey crew, he had four figurines, one of each of them. Donald has been missing for close to a month and he asks for him every night. Just the other day, we think we got it out of him. Where Donald?, he asked. Then he tapped his finger on his cheek and said, "Maybe.... garbage?" He went through a garbage-can obsession for a week or so, and we fear that Donald Duck may have met an unfortunate fate.)
- Labeling the color of everything and then telling us what it is not: Shirt is red - not blue. Red!
- Playing "band" - insisting we put on Happy Monster Band, and then handing each of us an instrument so we can all play along. The cutest part? He counts off before we're allowed to play: "1, 2, 3..." and then we can start strumming the "gee" or banging the drums or playing the recorder (which, the moment he saw it, he called a "clar-net", something he probably picked up from all the Little Einsteins he used to watch).
- Princess, our cat. Oh, the torture she puts up with! He loves laying on her and hugging her. He hasn't yet gotten that he should not, under any circumstances, try to ride her like a horse. It's just a matter of time before she takes a good swipe at him, I'm sure.
- Presents. He may not "get" that Santa brings the presents (because so far, the mailman and his grandparents have brought them all), but man, he understands presents, opening presents, wanting presents, asking for presents, announcing that there are no more presents - you get the picture
In heart news: we're waiting on his cath date, which will be sometime in January. The thought of it makes me sick, so I'm making a strong effort not to think about it. Fontan still on track for May or June. I'm really hoping I go back into the denial phase again soon. It may not be healthy, but it's a lot easier than having to deal with thinking about what lies ahead.
I'm not going to end on that note, so I'll end on this: we are just a mere two months away from Sammy's second birthday. Everyday he amazes us with the things we were once afraid we may never get to see, and everyday we give thanks and gratitude for each moment we have with him, our little munkin wild man!
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Wow. We're less than two weeks away from Sammy's first birthday.
He is just amazing.
He's cruising like a champ, though no real desire to walk on his own yet. He stacks blocks, puts things inside other things, makes the motion for "choo choo" and "pinch pinch" (crab), barks when asked what noise a dog makes - and occasionally meows for the cats, too. He dances a LOT, and does all the motions to the Wiggles' "Hot Potato".
He is insanely active - part of the reason, they believe, that he wasn't gaining any weight. He just does not stop! He crawls up AND down steps and climbs up on everything! He's really quite bright - and I'm not just saying that because I'm his mother. ;-) He says a few words - mama, dada, done, koom (vacuum), more and ba (ball or bottle). He also does the sign for "more" - we're working on "please" and "thank you" as well.
He loves the bath still, though freaks out in elevators and public restrooms. LOVES avocados - put away a whole one today!. We're still working on his soy/milk/egg protein intolerance, but got the okay to give him a real cake at his birthday. If he can feed it to himself, he's happy with it. He's starting to use the spoon on his own, and can drink out of a cup (no sippy!) if we don't mind cleaning up some spilled juice along the way. :-)
Oh yeah - and he learned how to throw temper tantrums. That's been fun. Heh.
Seven teeth - three on the bottom, four on top - and we're certain by the drool and gnawing on EVERYTHING that there are more on the way.
We had a bit of a battle with an upper respiratory thing WHILE teething, which led to some weight loss, which bumped up against a pretty nasty stomach bug, which led to even MORE weight loss. He had spent the past three months just at the 18lb mark, and with the winter virus fun, managed to drop down to 17lbs, 11oz. Ack! Though he's feeling MUCH better, eating like he's never eaten before - and put on almost a pound in a week! Yay!
I can't believe he's almost one. He's so independent and so interactive - and still just as smiley and outgoing. And aside from the toddling part - which we expect soon - he's becoming more and more a toddler and less and less a baby every day. It's crazy to think that this time last year I was begging to be done with the pregnancy - yet at the same time so afraid of what the future held. I still am - but I never could have expected that the last year would have gone as smoothly as it did (really, compared to how it could have been, this was smooth), or that we'd have such a fantastic, amazing little boy to show for it.
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It's so bizarre how babies learn things. And not so much HOW they learn, but rather that they do. They go from these little creatures who lie on their backs and coo at the ceiling, to walking, talking, thinking beings. And watching the transformation is just wonderfully, amazingly wild.
Most recently - Sammy's learned to find the train and the Grandma in two of his books. When I ask, he'll flip back and forth through the book until he finds the right page, and then starts squealing. The Grandma shows up on two pages; on the second, she's surrounded with other people. He will actually point to the Grandma. It's just incredible. And if we ask him where the baby is, he'll look for the mirror. Music? Looks for the radio in each room and knows just where they are. And man - you can't say the words "bath" or "juice" around this kid without him going into full-body kicks and excited screeches. (My new favorite time of the day is his bathtime - he knows what's coming up, and he'll chase me down the hallway to the bathroom and try to crawl into the tub. And forget about once he's stripped down and I pick him up to walk from his room to the bath - legs kicking, arms flailing. I can't get him there fast enough!)
He's started to make vrooom-raspberry noises at both cars and vacuums. And I learned that "day-day" actually means several things, and developmentally, this isn't considered a word as much as it is a stage before they start saying real words. He mimics intonation, even if he doesn't get the word-sounds perfect.
He cruises like a champ and is still practicing freaking mama out by letting go and standing on his own for a few seconds. He is the most social baby, carrying on conversations with strangers in the grocery store and squealing and waving at other kids. It makes me feel good when he stops to say hi to some of the more elderly shoppers - it really seems to make their day to spend a few moments "talking" with him.
He truly is a special little baby. Maybe all kids are like this and I haven't been around enough to know, but I can't help but feel that there's something extra special about him. He just radiates happiness and love, and really - he seems to brighten the days of so many people, even strangers. It's so incredible.
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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!
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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.
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Once upon a time, I took pictures of things other than my baby. Really, I did.
I vaguely remember those days. You mean there was life before Sammy?
Jay getting laid off was the best thing - how else could we spend entire afternoons snuggled in bed, simply watching the baby sleep?
We've grown oblivious to the outside world. Time is completely lost on us. Jobs seem like such a foreign concept. Every so often I stop and think: my friends are getting ready for work right now. Or, my students are in class learning right now. Or, people are going about their usual days, unaware that our days are wrapped up in this tiny little human in our little house.
I also stop and look at him and think, Holy crap, we made him. My body made this little creature!
I also contemplate things like vacuuming and making the bed, but that all seems so trivial compared to holding a sleeping Sammy in my arms.
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I can't be the only mama who breaks into Pearl Jam every time she sees the Evenflo bottles.
Ha! Take that, minivan soccer mama creeping up inside! I AM a ROCKSTAR mama! I sing Pearl Jam and cool songs to my baby! Folk music! Jazz! Classic rock! No Baby Einstein midi crap in this house, no matter how good their marketing!
(Heh. Sleep deprivation, anyone?)
The last couple of days have been a blur of sleep and not enough sleep, pumping, feeding, changing diapers, smothering kisses, tagteaming nighttime feedings, calming (or trying to) tears, counting up ounces eaten, doing laundry, washing bottles, sterilizing everything, watching him find his reflection in the mirror, pediatrician visits (two since we came home, cardiologist visit today), waiting for his smile to let us know he's falling asleep, trying to find the perfect way to rest my hand on his chest to make sure he's breathing without waking him up, breaking into randomly created songs about poop and how much we love him (though not always in the same song), making up new nicknames like Doodlemuffin and Muffinhead (though he's a Doodle through and through), creating an entire new vocabulary (nummienolas = food, noonie = pacifier), worrying and crying about what the future holds - and then kicking myself in the arse and reminding myself to take in the moment as he is right now (because he's just freaking AWESOME in every possible way), and generally just loving the crap out of him.
(Of course, if I had said that out loud, I'd immediately cover his ears as I said the word "crap" - after all, I used to give my students a hard time if they cursed in front of my pregnant belly, claiming that I would hunt them down if my baby's first word was any of the words they were spewing. Nevermind that mama's the Queen Trucker Mouth when someone cuts her off in traffic. Whatever.)
Anyway, I hear little Doodle stirrings - sounds like time for breakfast. Good thing mama managed to scarf hers down (AND pump AND get his meds ready AND pack for the trip to the doctor AND make up some bottles) all while he was snoozing. Go mama with your bad, sleep-deprived, Pearl-Jam-singin' self!
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We survived our first day at home alone with this little creature. Sure, it meant taking turns sleeping on the floor of his room because the cosleeper wasn't set up and neither of us could really bear to leave him alone. And sure, there was fussing and a generally unhappy belly - complete with projectile vomiting - because Mama fed him the higher calorie mixture by accident. But there were also champion diaper changes, meds given at the very right times, showers, naps, the realization that little monkey can focus on his reflection, a discovery that his little fingers fit perfectly in his little mouth if he curls them just right - and lots and lots of snuggling with Mama and Daddy.
All in all, a fantastic day.
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Samson Daniel
2/24/06 7:05am
7lbs, 4oz - 19in.
Just a quick check-in since we only have access when we're with Sammy, and when we're here, well, all we want to do is hold him.
He's precious. We're both in love in ways we never thought we could be.
The birth was a-ok until the pushing started. Four hours and a few really serious scares, Sammy was born with the help of forceps, his cord wrapped around his neck and emergency intervention by about 10 different doctors. But he's here and awake and he knows his Mommy and Daddy already and that's all that matters to us right now. The whole story will have to wait - but the whole "I'd do it all over again" line is completely true.
His surgery is scheduled for Wednesday with the possibility of being bumped up to Monday or Tuesday. We met with one of his cardiologists this afternoon, and things look good. I'll go into more details later, but it's not traditional HLHS as they would define it. He'll still need the same surgeries, but they bumped up his survival to 90-95%! Please cross your fingers and pray and send energy and all the good things you've been doing for us. It seems to be working!
Anyway, I know you're all dying for some pictures - so here they are! No time to edit/comment/describe them - but I think you can figure out who's who. :-)
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We started the induction process this morning around 11.
Two doses of Cytotec and I'm ONE whole centimeter dilated! I wanted to kiss the OB on duty. Progress, baby - there's progress! After weeks of contractions and no dilation, this was an absolute thrill to hear.
They gave me a third dose, which sent the contractions into a tizzy. It was good practice for tomorrow: breathe through them, thank my body for doing such a good job, remind myself that the pain is good pain, pain with a purpose. Stay positive.
Originally they wanted to get a few doses in and then start the Pitocin at 7:30 this evening. Ick - I would have been in labor alllll night. I put up a bit of a fight, and stubborn little me won my silly battle - they'll reevaluate for Pitocin when we're admitted at 7:30 in the morning. At least now we can sneak in a warm shower and restful (hah!) night in a snuggly hotel bed.
So sometime tomorrow little Sammy should be here. Eeeeeek. We're about to become parents.
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Pisces, Virgo rising is a very good sign, strong and kind,
And the little boy is mine.
-Danny's Song, the inspiration for his middle name
The good thing in all this waiting? He held out to the 19th - looks like I'll be getting my little Pisces boy after all!
And while we're on astrology, my horoscope for today: An indecisive friend is trying your patience. Give them a less-than-gentle nudge. Heh. He was insanely hyper last night, and I swear I managed to grab his knee and tell him to cut it out - does that count?
No change, other than that Sammy seems to have dropped even further down - there's a huge empty space at the top of my belly that wasn't there yesterday. For the record - walking lots? Nothing. Pineapple? Nada. I refuse to go the castor oil route, and eggplant makes my stomach turn. Oh well.
If he doesn't come on his own, we go in Wednesday morning for a scheduled induction. I'm not thrilled about this - I'd rather my body do what it knows to do - but at least this way we know we'll get the weekend with him before his surgery.
I've been meaning to post the "schedule of events" for once he's here, so you know what's going on.
Once he's born, they'll take him for evaluation. Our hope is that we'll get fifteen minutes or so with him before they take him. The nurse who runs the floor told me that if he looks good, I'll get a chance to try to feed him. Yippee!
He'll go to NICU first, where they'll start his IV (prostaglandin) to keep the ductus open. After, he may come back to my room in one of those heater units, but it's more likely he'll go to CICU (Cardiac Intensive Care Unit).
Once I'm settled and feeling up to it, I can get wheeled over to the CICU and spend whatever time I want with him, even if I haven't been discharged yet. I don't think I'll be able to feed him once he's in the CICU - they'll feed him via IV. They'll do the echo and other tests on him there to determine just what needs to get done during his surgery.
They don't do scheduled surgeries on the weekends, so as long as nothing of an emergency nature comes up beforehand, he likely won't have his surgery until Monday the 27th at the earliest. It could be Tuesday, it could be Wednesday.
After that, it's up in the air. I hate to think about what our time in recovery is going to be like - he'll be paralyzed and sedated for a while afterwards, to help with the healing and the pain. My understanding is that his chest will be open for about three days, should they need to go back in and do anything else. Once it's closed, they'll start to ween him from the morphine, and then we work on feeding and weight gain. We could be there anywhere from two weeks to, well, who knows.
As for updates - we'll have access from Children's Hospital. I'm sure in those first few days we'll be camera happy, and I'll be updating regularly once he has his surgery to let everyone know how he's doing.
Friends and family - please know that while we'd love for you to see him, if you've been sick or have been exposed to any sort of illness, we need you to wait until you're healthy to meet him. I know - it'll be hard! - but we can't risk getting him sick. :-(
Thanks so much for all your support the past few months - it means more to us than you know.
Comments (1)
Sammy will be born early Sunday morning. How do I know this?
Because we're expecting a Nor'easter late Saturday into Sunday and we live about an hour from the hospital, that's how. We're looking at high winds and snowfall rates of up to 3 inches an hour, and the Weather Channel tells us to "plan to have have travel completed by Saturday afternoon."
So I've got twenty bucks on my water breaking at 10pm on Saturday, well after our "travel plans" should be completed, with full force contractions immediately following. Anyone else want in? This could be a great money maker! (I mistyped that the first time as "monkey maker" - heh!)
I had NO problem with the idea of giving birth on the side of the road before we found out about his heart. Now? I'd like to be where they can take him immediately and make sure he's okay - which isn't going to happen on the shoulder of 95 in a foot of snow. Eeek.
Our little snow monkey. Heh.
Edited: We decided to make reservations at a hotel in Boston for Saturday night - our Valentine's Day gift to ourselves. And it's a great room at a good price - thanks to last-minute rates at Travelocity. (And maybe others will cancel because of the storm and they'll see my poppin' belly and upgrade us to a reaaaaally nice room.) We'll probably indulge in a nice little dinner, too, if I can find something dressy that still fits.
Now - can we write this off as a medical expense? ;-)
Comments (3)
Dear little monkey,
Over the past few weeks, your Daddy worked very, very hard to get your room all sparkly and fun and ready for you. The walls are bright and cheery and the closet is newly rebuilt to fit all your little clothes and yummy smelling bath stuff. There are monkeys EVERYWHERE! There's a monkey clock (your daddy's favorite part of the room), a monkey chair, a monkey lamp, monkey stuffed animals, monkey books, monkey blankets and monkey overalls.
Now, the only little monkey missing is you! We're ready when you are!
Love,
Mommy
So my dream of wandering into my OB appointment today and finding out that I was 8cm dilated and hadn't been feeling a thing the whole time was completely shattered.
I'm not dilated. At all. Not a damn fraction of a centimeter. Nada.
I am 50% effaced and he's at -2, which from what I can feel is pretty well lodged in places I'm not used to feeling so much pressure.
The regular contractions (and they're definitely regular - every five minutes for about 45 seconds - and enough that I can pick out the peaks without a problem) are "simply helping to move things along", according to the OB, and she now thinks I'll likely go until close to his due date.
So that's where we are - or where he is, I should say. Two more weeks - I'm not sure if I'm up for it!
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