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
Almost 4 1/2 years old. Just wanted to share a few photos:
Happy holidays!
I just wanted to share Sammy's first school pictures. He's rapidly approaching 4 (February!). It's crazy to think what he's been through when we're dealing with a wild, energetic, typical little boy. Did I mention wild? And energetic?
We have a checkup with his cardiologist in April... hopefully all will be quiet until then. Hope everyone had a great holiday!
Comments (1)
Sammy is now one year post-Fontan!
The further we get away from his surgeries, the more I can look back at just how difficult and amazing the past three years have been. When you're in the throes of it, it is emotional and scary and hard, but when you can look back on it, it's truly impossible to acknowledge the hugeness of it all.
Thursday was one year. I climbed up into his little bunkbed and snuggled him while he still slept, amazed and feeling so blessed. He got up, had breakfast and went to preschool like a typical 3 year old. We picked him up and took him out for ice cream to celebrate, and then he was off for music lessons - drums. Sure, sometimes (not always!) he tires a little easier and has perpetual blueberry lips, but to realize that he's been through 3 open heart surgeries and is just about as normal as any other kid - it's incredible.
The strange thing? I felt all day long that May 21, the day of his Fontan, was really his birthday. I know his real birthday is in February, but it felt like he was truly given life on May 21. And in a way, he was. And we will forever be grateful for that.
(While you're here, would you mind donating to our walk in support of Children's Hospital Boston? We cannot begin to express our gratitude for all they have done for Sammy and countless other children. Thanks so much!)
Comments (4)
I just realized that it's already July 22nd. Yesterday marked two months since Sammy's Fontan.
Does this look like a boy who just had open-heart surgery two months ago?
(Nevermind that he fell - from the top, about 5 1/2 feet from the ground - on his second climb or that mama felt like throwing up for three hours after. After he fell, he cried hysterically for about a minute, then started crying because he wanted to go climb again and couldn't because I was holding him. He climbed that sucker three more times, each time coming down through the "big kid slide" that had scared him just half an hour earlier. It's amazing watching him grow like this, each day, going beyond in leaps and bounds.)
This morning, he spent an hour chasing the big kids up and through tunnels and reappearing down twisty slides that started at least fifteen feet off the ground. I sat at a nearby table and wanted to cry. I wanted to cry for the last three years of not knowing, of worrying, of not being able to dream, of trying to dream of days like this one and not letting myself.
The grandmother of one of the bigger kids sat next to me and talked about her kids. She had four, and the youngest was born with a heart condition - an enlarged heart that he eventually grew into. When I told her about Sammy, she said to me, "You've gotta just let him be. You can't hold him back any because of it." I looked at the tunnels and knew my little boy was in there somewhere, somewhere I couldn't see, having a blast, climbing walls and slides and playing with the other kids. I don't ever want to hold him back because of his heart. I don't want it to define him. Today, it didn't. I don't know what the future holds. I know how cruel other kids can be. I cringe to think of the day where he is teased, made to feel bad about the big scar that has saved his life three times. But that's neither here nor there right now.
In a few weeks, just about three months post-Fontan, Sammy will start school. He will go off and have experiences that neither of us know about. And this is just the beginning of a whole world out there waiting for him to figure out, live, enjoy. I'm so grateful we have the opportunity to just "let him be" - and I can't wait to see who he becomes.
Comments (4)
I thought it would be important to update with how Sammy has recovered (physically AND emotionally) from the surgery and hospital stay. This was a huge concern and fear for me pre-op - now that he's 2, very aware and very verbal - how would he be affected by what had just happened? I thought it might be helpful to pre-Fontan folks to read about our experience.
Tomorrow is three weeks post-op and 99.999% of the time, you'd never know what he'd been through! Saturday we attended Jack's first birthday party, and there was Sammy, running around with the 4 year olds, soaking them with water guns and laughing his head off. It just floored all of us - how is it possible that he JUST had major open-heart surgery, and here he was, acting like any other energetic, happy, wild little man?
That's not to say there haven't been small signs of the emotional rollercoaster of the hospital stay. The first week or so, he'd wake in the middle of the night saying things like, "NO! I don't want to!" We assumed it was leftover from the night nurses taking vitals, giving meds, etc. He hasn't done it since, and has fallen back into sleeping through the night. He will sometimes ask us to lay down next to him, but otherwise he's falling asleep on his own. This was a huge concern for me - I was afraid he'd be afraid to be alone. Nope. Yay!
He's not a fan of being shirtless. If you pull up his shirt, he yanks it back down and tells us not to do that. Again, I'm pretty sure it has to do with constant attention to his chest by a rotating slew of strange doctors and nurses. He has gotten back to enjoying his baths, though. Woo hoo!
He has started something we're not sure is simply a two-year-old thing that coincides with coming home from the hospital, but he'll say things like, "No, mama, I don't like that game" or "No, daddy, don't say that." I pouted once and he had a meltdown - "No mama, don't do that! Don't make that face!" I'm sure it also has to do with control and feeling the need to control something, anything since he had so little control in the hospital.
Physically, we still can't lift him under the arms. The scab is just about all gone from his incision, and has left behind a thin, white scar. He did develop a surface infection at the incision site, but it's cleared up with antibiotics. They cut the sutures from his chest tube sites last week. We have a check up with his cardiologist in three months; otherwise, they anticipate closing the fenestration by cath in a year or two, unless his sats don't improve on their own (he's hanging around 80). In that case, they'll close it sooner.
His appetite came back with a vengence about 2 1/2 weeks post-op. He's back to eating just as he was before the Fontan - here's hoping he gains some weight! He didn't lose much in the hospital - about .1kg - but he's always been on the very skinny side, and the weight he did lose seems to have come right from his arms and legs. They're soooo skinny!
All in all, aside from the occasional random things he remembers about the hospital (for example, "They have lollipops, just like in the hospital!"), he's back to the little boy pre-surgery. He doesn't seem any worse for the wear, except for the little blips of need for control.
Now if only this oppressive heat wave would lift so I can get him outside and back to enjoying summer!
Comments (11)
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)
Sammy is having one hell of a developmental growth spurt the past few days. We knew he had lots of energy, but we had no idea what he was storing in that tiny body! He's been living up to his latest title, "Wild man": racing circles around the house while screaming at the top of his lungs (in a "Hey! I love the sound of my own voice!" kind of way), spinning in circles and saying "Whoa... whoa...whoa....", wanting to walk up and down the steps, climbing up on the coffee table and squealing and running away from us when we catch him, stomping around Yeti style, throwing balls - and weebles, and little people...
Physical development insanity aside, he's having a cognitive one as well. His language continues to catch us off guard - he has started saying several two word sentences, and this weekend he counted to five on his own! He will count up to ten with prompting, but this was all him. He's giving us more insight into the inner workings of his brain, which is really cool. We're understanding just how much he understands, how much he puts together, even if he doesn't have the verbal ability to share all that just yet.
We bought him a firetruck big boy bed, and he made the transition very well. I don't think he ever particularly took to his crib, and sleepless teething nights aside, he's sleeping from 8:30 - 6:30 and waking only once. He's still a tiny little man, barely weighing in at 21 pounds, but he's tall - and I swear, he just keeps getting taller every time I turn around!
He loves stickers, making his dinosaurs walk and growl, making his Little People "doot dee doo" across the floor, our cat Princess, playing his little guitar and singing, dancing to the Backyardigans, books, peas, grapes, pesto (on a spoon, no less!), spicy food, waffles, feeding himself, giving kisses, singing "The Itsy Bitsy Spider" and "Head Shoulders Knees and Toes", climbing on anything and everything, stickers, stickers and more stickers. Did I mention that he loves stickers? :-)
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Sammy is now seventeen months old, though some days I swear he thinks he's three. He keeps us on our toes - or at least in running sneakers - he is quite the energetic little man! He truly has more energy than we could ever have imagined, running circles around the other kids. We have noticed, however, that he breathes heavier when doing things like climbing the stairs - but it definitely does not slow him down! We took him camping at our favorite folk festival - Falcon Ridge - for four days. He did great, dancing up a storm and running around the hills. You'd never know he has a heart condition. (Knock on wood.)
We've been lucky - he's had no developmental delays whatsoever. If anything, Early Intervention's last assessment put him a bit ahead of the game. We're just happy he's happy and doing what a kid his age is supposed to. He's starting to sing his A-B-Cs (with prompting - "What comes next?") and he's a huge fan of Patty-cake. He'll sing along and make the motions - roll it, pat it, mark it. Too cute. He's also obsessed with his guitar, dragging it around the house, plucking the string and then singing. His vocabulary seems to grow every day, and he's a huge fan of saying "More please!" complete with matching signs. He's eating much better, too - loving anything fruit or veggies. We actually have to refrain from giving them to him sometimes because if we do, he won't eat anything else on his plate!
We're still chugging away towards 21lbs. He's still in the 5th percentile for his weight, following the curve just as he should. But he's quite tall for his weight - coming in at 32 inches at in the 50th percentile. Finding pants that fit this kid is quite the challenge!
In a few weeks, Sammy will start school for a few hours a day. This is so I can go back to work for a bit and Sammy can get more socialization than I can give him at home. I'm having a hard time with it, but I know he'll do great - he LOVES other kids and loves playing. When we interviewed the school, he went around and said hi to every kid and then made himself at home with the toys, barely even noticing that we had left the room.
As for his heart: we have a cardiologist appointment in September, where we've been told he'll be switched (FINALLY!) from Captopril three times a day to Enalapril twice a day. He's still on 1/2 a baby aspirin, but we've weaned him from his Zantac. They'll also schedule his pre-Fontan cath at that appointment, and then after his cath they'll schedule the Fontan. We expect it'll be sometime late spring - May or June. We're also hoping to be able to schedule it for the same day (or within a day) of his heart friend Ellie's Fontan. This way, we'll be in the hospital with Alicen and Chris for recovery - a great support for Sammy, but also for Mom and Dad.
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I probably shouldn't have been so upset about it, but I was. There's such a concern around heart kids and their development - worries from sedation, intubation, lying in a hospital bed for as long as they had, not being able to do tummy time because of surgeries, etc. It's become so ingrained to focus so much on his development, and naturally, we want to make sure he's on track - and if he seems to be veering, we wanted to know as soon as possible so we can make sure he continues to develop appropriately.
Yeah. We had Early Intervention in this morning to do a full evaluation. Last time they were in, they gave us a mild Sensory Integration Disorder diagnosis. It seems as though the work we've been doing with Sammy is working and he's much better - and then they pretty much told us what we knew in our hearts to be true: our kid is a freakin' genius!
Ok, maybe not a genius - but he did score significantly higher than his age in all areas of development. They were floored at some of the things he was doing - things that put him in the 18 to 20 month range. He's adding new words every day and understanding even more.
The only area where he fell right on the mark for his age was his fine motor skills, which is interesting - he used to be ahead of his age for fine motor and delayed a bit for his gross motor (because he couldn't do tummy time for so long). Now - he's ahead for gross motor (we can't slow this kid down)!
I knew he wasn't delayed. Even better? They gave me new ideas for games and activities to fill up our days and keep Sammy learning and entertained. I'm looking forward to trying a bunch of them out.
As always, thanks for checking in on Sammy. We truly appreciate all the love, positive thoughts and prayers you send his way!
Since we last checked in:
- Sammy has mastered walking. And running. And using toys to climb to places he shouldn't be. And climbing over the gate and scooting up the stairs into his room before we (ok, ok, I) noticed he wasn't playing in the living room. Eeek.
- He started sleeping through the night. And then stopped. We're hoping he starts again soon, because this no-sleeping thing is really starting to suck after well over a year!
- We spent Mother's Day taking in Sammy's first Red Sox game. What a blast! He loved every last bit of it - the sights, the smells, the people, the sounds, all of it. He wouldn't sit still, so we spent most of the time walking around with him, but it was such a great day - definitely one of my favorites, ever.
- He LOVES cheese. And goldfish crackers. And broccoli - my god, does he love broccoli! He loves corn on the cob, salmon, green beans, pasta, hamburgers - you name it, he's probably tried it (and liked it!). He's even had Fenway sausage! Unfortunately, we think he's still having a hard time with whole milk, so he's on soy milk until late summer, when we'll try whole milk again.
- His weight took a considerable hit when he started walking. Apparently, he was too busy running around to stop to eat, and between his insane energy and a nasty cold, he lost about 8 ounces over a week or so. Thankfully, he managed to put it back on. We're still under the 20lb mark at 19lb 13oz, putting him in the 5th percentile. He's in the 50th, though, for height - long and lean... so not like his mama. ;-)
- He plays "Head, Shoulders, Knees and Toes" and will even point to his eyes, ears, nose and mouth!
- Now that he's got walking down and he's running around the house, his vocabulary is starting to really take off. For our records, because it'll be fun to look back at this, here's what he's saying: ba (ball, bubbles, butterfly), ma (balloon, monkey, max, cat - this actually makes sense, as our cat's name is Max), hat, clock, mama, dada, ga (goldfish, guitar), book, cah (car), Diego, Dah (Dora), Elmo, Boots, all done, down, cracker (usually drawn out, like craaaah...kah), baba, nini (good night), hi, bye, stah (stars), dah (door)
I think that's it for now. We've got Early Intervention coming in next week to do a check-in eval to make sure he's staying on track.
Thanks for checking in on him!
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Sammy, training for the 7-mile Miles for Miracles walk
Our son Samson was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. We knew at 20 weeks pregnant that he would need three open heart surgeries, the first when he was a tiny four days old. Little did we realize how blessed we were to live so close to Children's Hospital Boston, one of the best hospitals in the country for children's cardiac care.
Sammy spent a month of his first year of life at CHB - a total of 29 days for surgeries and another 3 for dehydration and an upper respiratory virus. He spent 14 in the CICU after his first surgery, the Norwood procedure, and 5 on the "step down" floor. Then, at five months old, he spent 10 days at CHB after the second surgery, the Glenn procedure. Each person worked as a team that moved seemingly effortlessly to give Sammy the very best care possible. We can't find enough ways to thank them for giving Sammy such a fighting chance. Helping to raise money so that CHB can continue their research, support their doctors, nurses and staff and take care of our children in the best ways possible - that's a cause we could get behind!
It is for Sammy, and for many other reasons, that we are walking Miles for Miracles this June.
Many of you know our close friends Susannah and Reilly. At 20 weeks in-utero, little Jack was diagnosed with an endocardial cushion defect, a heart defect that will require open-heart surgery at CHB. We knew that Jack and Sammy would be lifelong buddies (like their dads!), but we would never have imagined that they would share this as well. Jack is due in July and we know he is in fantastic hands at CHB.
Last year we walked as Team Sammy with some of our amazing family and friends. This year, we're joining with Su, Reilly and little Jack-to-be, as well as our good friends Alicen, Chris and their little girl Ellie and Amy, Lou and their son Jack. We met Alicen & Chris before Ellie was born and spent many a night together as Sammy and Ellie recovered from their Norwood surgeries together. We met Amy, Lou and little Jack when we were in for Sammy's Glenn. Jack was just a newborn, in for his Norwood. It's amazing the bonds you form as heart families!
So, more appropriately this year, our new team name is Together in Heart!
If you're local, please consider joining our team! You have the option of doing the 2-mile walk or the 7-mile walk, both along the beautiful Charles River. If you can't join us, if you've been touched in some way by Sammy's story and life, please consider donating to help us reach our individual goals of $1,000. (Donate to Jason or Erika.) We don't have enough ways to thank CHB - we'd like to make this one really count!
Thanks!
Comments (1)
Two days ago, my friend Alyson said to me, "His first birthday - heart issue or not - is going to be an emotional day no matter how you slice it."
Did I expect to be crying within moments of waking up? Seriously. Jay went and got Sammy from his crib just minutes before the actual one year anniversary of his birth and had him hand me two cards - one from Sammy and one from him thanking me for Sammy. Then the clocked flashed the very numbers for the very moment when Sammy entered the world and I turned into a blubbery mess.
It's been a very emotional year, a very hard year, a very amazing year. And it is so comforting to have it behind us. There's something about the one-year mark that seemed so huge to us, as though the first year is the hardest struggle with heart kids, and here - we made it! We made it to one! And he is fantastic! Even with one more surgery looming, it feels like the toughest, most fragile days are behind us. I know that might not be the case, but I'm hoping it is and that he sails through the next surgery and we have so many, many more birthdays ahead of us. He's on a good path - good weight gain (we broke 19lbs!), good heart numbers (we had sats in the 90s the other day!), right on target for all the milestones (talking up a storm and almost WALKING!!!) and just the happiest, most social little man. We couldn't be luckier. (Knock on wood. Please.)
He's no longer a little baby, and I'm so grateful for the toddler we now have.
My dad commented on Sammy's energy, how he has more energy than most kids my dad has known. There was no stopping the kid yesterday - he bowled over the other kids. Literally. What is it about first birthdays that makes everyone insist that the new toddler walk? We didn't get more than a few stumbly steps out of him - soon! - but he played hard and charmed everyone and made it through most of the cake before he had a meltdown - and rightfully so. I didn't schedule it quite right, and the cake came about a half-hour too late, when he should have been snuggled in and peacefully snoring away. Still, he mashed some cake, shared a handful or two with whomever was closest, smeared blue and red icing all over the Little Einstein shirt we had made for him and nibbled on the plastic Quincy decoration before being whisked off for naptime.
It was a great weekend filled with family and friends and a deep, deep appreciation for the support and love we've gotten over the past year. It may not have been said, but it was in our hearts all day long.
He's one now, and the most fantastic one-year-old I've ever known.
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I am ONE!
Happy birthday, my little man. We love you more than we could ever have imagined. Comments (2)
I had once asked my mom, who works with infants, toddlers & kindergarteners - at what point do kids slow down developmentally? Because really, how is it possible to keep changing and growing at this rate? Every so often I'll stop and look at all he's accomplished in say, the previous three days, and say to myself - wow, that was some growth spurt! I'm sure we'll have some downtime until the next one.
Ha!
In the past week, Sammy's gone from crawling to speed crawling to pulling himself up without hesitation to cruising. In two weeks, he's gotten three teeth, and we're waiting on the fourth. He's started truly babbling in his own little language with the addition of new combinations of sounds. He dances more often than not and knows that if there's no music playing, he just needs to look at one of us and wiggle and we'll flip on the Jack Johnson. And the strangest thing? He's truly conscious of the world around him. He's no longer a passive part of his surroundings. He climbs up on the things to explore. He sits and reads his books, quietly flipping pages and tracing the pictures with his tiny little pointer finger. (Even cuter? He "reads" the Cheerios box out loud to me. I'm not sure what's so appealing about that particular box, but he could spend forever analyzing it). He now realizes cause and effect. He wants to try to turn the light on and off. He waves and says, "Hi."
He knows things. It's wild.
I'm sure all parents are insanely proud when their kids start doing these things, but for each new step he takes, I'm in awe. This is a child we weren't sure we would have at nine months, a baby who we just expected would be developmentally delayed somehow - and look at him. He's truly amazing. (Knock on wood, please!)
I read somewhere recently something to this effect: I used to wonder in anger, "Why us? Why him?" Now I wonder in awe, "Why us? What did we do to deserve something so wonderful?" It sums up my feelings perfectly - every day I wonder what we did to deserve such a fantastically curious, happy little man little man in our lives.
So we have a tooth! The bottom left finally broke through the gum. We think he's working on the bottom right now, and man - he's not a happy camper at all.
And we have a crawler. He's getting really good at it, too - and even though he'll do the traditional crawl,he seems to prefer to keep one leg straight and do this sort of leg-pull-hop. He's even managed to get himself into down-dog, with his legs straight out and his arms straight out with feet & hands on the floor. If we didn't know any better, it looks like he's trying to pull himself into standing without holding on to anything else.
And we have the beginnings of a cruiser. If he's standing and holding Jay's hands, he'll take mine and walk to me. He'll easily pull himself up on your hands, and he's starting to pull himself up on other things - the coffee table, the little fence around his play area, the baker's rack.
He started meats last night - the sweet potatoes and chicken went over very well. We were going to wait until Thanksgiving, but I was getting tired of giving him the same rotation of veggies for dinner, and the milk/soy/egg intolerance limits what we can give him. He does great with finger foods - he's had that pincher grasp down for a month or two now - and seems to prefer to feed himself, so he's pretty familiar with avocado & banana chunks, and he's had some pasta, too. He's also drinking from a straw!
Last Wednesday, he clocked in at 17lbs, 6oz.
He loves Little Einsteins, and when they start patting, he starts patting. And when they say, "Now raise your arms as high as you can and say, BLASTOFF!" - guess what the little punk-punk does? Those arms go up even before they say it! One smart cookie, lemme tell you.
He claps, too, and says, "Yayyyyyyyyyy!" And he's starting to wave and say something that sounds awfully close to "Hi." And it's not just us - several people in the store the past few days have commented on how he just said hi to them! He also babbles "mama" and "dada" - though he's definitely starting to direct it at the right person.
Who is this kid, and what did you do with my baby?
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Is it strange that I stopped a woman in the store to thank her because she was wearing a bandage on her arm and an "I gave blood today!" sticker on her shirt?
I'm sure she thought me odd, but I wanted her to see the possible results of her donation. I told her how Sammy had needed tranfusions at just days old, and it's because of people like her that he's here today. And then I almost started crying and thanked her again and walked away.
Sammy is now just about 17 pounds. He's off the lasix, and the best we can figure, coming off of it allowed his body to start absorbing more iron, creating a pretty constipated little monkey. As a result, he didn't really want to eat solids and barely gained a thing over the course of two weeks. Now, we're pumping him full of prune, pear and apple juices and cutting back on foods like sweet potatoes and carrots (both of which he LOVES) to try to even things out. (He had just finished feeding himself avocado in the picture.) Hopefully then he'll start gaining again.
Even then, everyone - cardiologist, pediatrician, nurse - told us the weight gain would likely slow because he is insanely active. When he's awake, he DOES NOT STOP! He's squirming and wants to be everywhere at once. He's pulled himself to standing in the crib (he does it all the time elsewhere now), he gives hi-fives, feeds himself, tries to clap, shares his toys, drinks from a straw - oh yeah, and he CRAWLS. Sure, he only goes three or four steps at a time, but it's coming. I'm waiting for the moment when I turn my back and he's scooted out of the room. And to think - we figured he'd be behind on the crawling because of the lack of tummy time post-surgeries. Nope. Right on time.
He's just one amazing little pumpkin. Well, except for tonight, when he SHOULD be a pumpkin but he'll be a frog instead. One amazing little pumpkin froggie monkey boy.
(Oh schnikeys. HE JUST SAT HIMSELF UP FROM HIS TUMMY. Oh.my.god. There is just no slowing him down!)
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Sammy had his first real big trip - a four-hour trek to NY for Grandma & Grandpa's 30th Anniversary party. He did great, except for when he'd wake up in the truck and freak out because he couldn't see either one of us. The longest he's really ever been in a car was 45 minutes, so he was really out of sorts after almost three hours of staring out the back window.
You have a baby - in a bar?! He LOVED the ferry. We got there just moments before the 7pm was leaving, so they bumped us up from the 8 and snuck us on. The only tables still available were in the bar, but he wasn't fazed. (Mom, however, was keenly aware of how out-of-place her, "Are you going to eat all your nummies?" sounded amongst the Friday-night happy hour.) He spent an hour of the ride jumping up and down in our laps, lunging for everything and squealing with delight.
The visit was fantastic. Aside from Mama and Daddy thoroughly enjoying a party at the vineyard, Sammy met a lot of people - like, 50 of them! - who have been waiting for months to meet him, including his Aunt Danielle and three-year old cousin Jonah. It took a little while for Jonah to warm up to him, but once he did, he played and gave him kisses and all things adorable. Sammy also got to meet aunts and uncles and family friends - needless to say, he was smothered with love and hugs and cheek-pinching. Oh man, the cheek-pinching!
The little man turned 7 months yesterday. He's finally broken the 16 pound mark, clocking in at 16lb 1oz last Thursday. His oxygen saturations (sats) are hanging in the high 80s and low 90s, which is fantastic. My favorite nicknames are Pumpkinhead, Pumpkinbutt and Munkinman, and I make up silly little songs like, "Mama's got the nummies - the nummies that go in the tummies!" and "Munkin punkin poodle and pie, kissed the girls and made them cry. When the girls came out to play, Munkin punkin kissed them again - yay!". He's hitting almost every milestone, even getting a few of them early. He's babbling and mixing up all sorts of consonants and vowels. He loves bananas, sweet potatoes and peas. Still no teeth, though he's definitely teething. He sits up and plays a LOT, though still not much in the way of crawling. He seems fairly uninterested in it, prefering to sit or stand. He doesn't like napping and still doesn't sleep through the night, waking once or twice to eat. He LOVES our cat, Princess, as well as have some strange love of lights and fans. He picks up tiny objects, sending mama into a babyproofing tizzy. He plays peekaboo on his own and looks for objects when he throws them. He's taken baths in the big bath. He loves lunging for toys and getting his face in the water... so we got the okay to start him in swimming lessons! Hopefully we'll find a class with his friends Emily (who just turned one) and his little girlfriend Charlotte (who is about five weeks younger than he is).
We have a cardiologist appointment on October 3rd, and a pediatrician visit at 9 months, though I'm sure we'll be there sooner for a flu shot and his Synagist (RSV shot). Otherwise, we're truckin' along with one happy little monkey!
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He's so much fun - everything is such a blast for him! Spinach and peas for dinner? YAY! Fall over and bump his head? Hysterical! Poopies in his diaper? POOPIES ARE FUNNY, mama!
I spoke with his cardiologist the other night. I felt a little silly - his oxygen sats have been in the low-90s a lot lately, and I wanted to make sure that wasn't a problem. His doctor was thrilled. Not only that, we got the okay to do music & movement classes (we start this week!) AND... (I'm so excited) swimming classes! He was also surprised that Sammy doesn't really nap - if I get 2-3 half-hour naps out of him, we're having a good day. This kid has more energy than some non-"heart" kids!
I'm struggling with what to call things - I dread "heart-healthy" because it implies that his heart isn't healthy, when in fact - take a look at him! He's pushing 16 pounds, he plays non-stop, he sits, he stands, he talks, he eats everything. His heart is healthy - it just works differently. How do I distinguish him from other kids? I refuse to call them "normal" - he's just about as normal as can be... and for that we are so, so lucky. So, so blessed. We know this, every moment, every day.
Gah. Ze cutest bebe EVER. The happiest bebe ever. I don't know who or what thought we should have this particular little monkey, but we must have done something pretty damned good along the way to deserve him.
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his first haircut the other night. He wasn't all too thrilled, and really, we probably shouldn't have tried to cut it while he was awake and all squirmy. It's a little short, sure, and a little choppy, but c'mon - he's 6 months old. Hardly a crisis in my eyes - and speaking of eyes, I can see his now again!
In the past two weeks, Sammy has learned to roll from his back to his tummy and then to his back... and to his tummy and to his back... and to his tummy and to his back... except that he's only figured out how to do it to his right, so he manages to get wedged in some random wall -
at which point he just lays there and babbles things like, "Dadadadadadada" and "nanananananana" - mixed in with screeches I'm CERTAIN you must hear at your own homes. The conversations in our house now sound like this:
Me: You rolled over! (clap, clap)
Sammy: Daddadadada - AAAAAAAAAAAAAAAAAAAAAAAAAH - nanandadadada - EEEEEEEEEEEEEEEEEEEEEEEEEEEEE - ngaganananadadda.
And he sits up - like, I can plop him down and he stays that way. And stands up now, too, with some propping. Throw in teething, and he's become the "I'm lying down so I want mama to hold me, but no, I don't want to be held, I want to sit up but now I'm sitting up - EEEEEEEEEEEEEEEE! - I want to stand up but - AHHHHHHHHHHHAAWAAAAAH nananadadadda - I want to roll over and WAAAAAAAAAAAAAAAAAH my teeth hurt - rollrollroll - wawwawaaaaa ddaadadadad oooof - a wall! Mamamamamamamama!" kid.
Man, I thought he took a lot of energy before... this is crazy! How I still have ten pounds of baby weight on me, I just don't understand. I should have thighs of steel and no more grandma-jiggle arms for all the energy this kid requires!
So he's doing really well. He's eating solids like a champ, gaining weight and essentially doing everything a six-month old baby should be doing (and then some, our little social butterfly!). Our Early Intervention specialist even said that we don't need her, and she dropped us down to monthly visits. We don't see the cardiologist again until October, and we aren't scheduled for the pediatrician until November, unless RSV season starts earlier and we have to head in for his Synagist shot.
Otherwise, we're living life with a very energetic (he won't nap more than 30 minutes!), very smiley (he LOVES to laugh), very happy little boy you'd never know has a heart condition. Knock on wood that it stays that way!
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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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Now while I'm completely enamored of Sammy's newfound ability to laugh, I am not at all amused when he taunts me with it. How might a fifteen-week-old infant taunt, you ask? Sammy had fallen quite cozily asleep in my arms, and I, apparently deluded into thinking I could actually get something done around the house, put him in his swing. Within moments, he's got the blanket in his mouth, giving me his big, puppy-dog eyes and laughing this snicker that seemed to say, Oh dear, dear mama, you THINK you're going to get in the shower. You must spend the next four hours smelly, bwahahah! That laundry that's been sitting in the washer for two days? Let it get musty, mama, for I AM AWAKE! Bwahahahahah!
Hrmmmm. I probably could have been doing laundry instead of typing this.
He's also learned to talk. He's currently carrying on a conversation with Mr. Giraffe, Mr. Zebra and Mr. Effalump as they spin circles over him in his crib. Last night, he had an extensive, deeply profound talk with his Daddy. (I have video proof!) He gets offended should Jay and I try to have a conversation without him, jumping in with his "aaaaoooommmm"s and "mmmmgggggaaaaa"s. And like the proud mama I am, I must share that the early intervention folks said he's talking a good two months ahead of where he should be. (I swear he says "mom" in this video ;-)) At this rate, he'll be wooing the little ladies in his life with Shakespearean sonnets at his first birthday. (I knew I took four semesters of Shakespeare for something - it's in his genes! ;-))
In other news, we'll be doing the Miles for Miracles Walk on Sunday to help raise money for Children's Hospital Boston. Thank you so much to everyone who donated - I've raised $1,175 because of you, and our team is $5 away from $3,000! You all rock. Here's hoping for some sun, a blister-free seven miles and a happy Sammy through it all. :-)
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A few weeks ago, we'd get these little watery blurbles. Lately, though, as he's gotten stronger, so have his farts. I mean, shoot him clear across the crib farts. What cracks me up the most, though, is when he's laying down playing, he'll pull his knees up and let one rip. He doesn't seemed fazed by it either - he just keeps talking to his monkeys while playing tuba out his butt.
Seriously. I think this is the funniest thing ever.
When I was in high school, my friend and I would have belching contests. We would down glasses of soda and see who could let out the best burp. We had a whole ranking system - duration, melody, tone, volume. I outgrew it - until I had Sammy. Now, I commend him for his excellent burps post-bottle, and actually, on occasion, even show him how's it done. (His daddy is one impressed papa and husband, let me tell you.)
I'm not sure what kind of gasmonster I'm creating with all this happy burp-fart praise, but man - I can see it now, he and his best five-year-old friend sitting in his room, rating the melody of their farts.
It's enough to make any mama proud. *sniffle*
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Knock on wood - guess who just slept for six hours straight? (That's right - Sammy - AND mama and daddy!)
I've been having a problem when teaching Sammy about the world - this kid knows nothing. And I don't mean that in a mean sort of way - but he knows nothing. Really - he's been out of my body and in this world a whopping 10 weeks. How do you teach a kid about leaves changing in the fall if he doesn't know leaves, trees or fall? Or how people drive north to go leaf-peeping in the mountains when he doesn't know mountains? I end up on these huge digressions - mountains were formed when two plates of earth shifted and forced land all the way up. It's actually kind of funny - before you know it, it's two hours later and I've tried to define and describe nearly every word in every sentence of every digression, each of which turns into a completely new drift in the whole process, and before I know it, we're talking about things like Vermont, Ben & Jerry's and cheddar cheese and - what happened to it's really warm for a spring day, which is where we started?
Nevermind that I make up half the stuff I tell him. Like I know the whole explanation of why it rains - I have two degrees in Literature, for cryinoutloud - but I do know that the kid loved the feel of it on his face and laughed the whole time.
Now, puddle-jumping is something this mama can totally teach him. And you better bet your butt, I can't wait.
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Hi all,
On June 11, Jay, Sammy and I will be walking 7 miles around the Charles River as part of Miles for Miracles, a fundraiser for Children's Hospital Boston.
As you likely know, our son Samson was born with a congenital heart defect called Hypoplastic Left Heart Syndrome/Double-Outlet Right Ventricle (HLHS/DORV). We knew at 20 weeks pregnant that he would need three open heart surgeries, the first when he was a tiny four days old.
We chose Children's Hospital Boston partially because of its location - we live 45 minutes away - but largely for its excellent reputation. We can't go on enough about how wonderful CHB really is.
Sammy spent a total of 19 days at CHB - 14 in the CICU after his Norwood and 5 on the "step down" floor. Never did we question the expertise and professionalism of the nurses, doctors and surgeons. Each person worked as a team that moved seemingly effortlessly to give Sammy the very best care possible. They included us in as much as they possibly could, encouraging us to learn about everything our son was going through. They encouraged us to be there with him, to talk to him, play music for him, let him know we were there with him. This was a huge comfort for us during a very difficult time.
We're fundraising for this event because we believe so strongly in all the good things Children's Hospital Boston does for kids. Its patient care programs are incredibly sensitive to what sick and injured children and their families really need. Its researchers regularly make amazing discoveries that change children's lives. It welcomes kids whose families can't afford health care-more than any other hospital in Massachusetts. It makes a point of reaching out to local communities to help low-income and at-risk kids. And it really gets the importance of training the next generation of top pediatricians and nurses. We can't think of a worthier organization.
Please consider donating to the cause. Every donation makes such a difference. Want to donate? And if you're interested in walking with us on Team Sammy, let me know!
Thanks so much for your support through everything.
Love,
Erika, Jay & Sammy
>For ages, I was always the one with the camera in hand. Since Sammy's been born, Jay's taken over - who knew he was such an amazing photographer?
And I might be biased, but that is just one gorgeous baby. ;-)
The last of the scab on his incision fell off this week, so Sammy had his first "real" bath today. He didn't scream up a storm - instead, he only sniffled and let out a few whines. Mama thinks that with some practice, he'll be just like her and want to spend all day in the warm water.
That's about all for now. It's spring and Sammy slept well last night, which means mama and daddy are somewhat refreshed and feeling somewhat normal. We're all getting cleaned up for a walk along the river, some grilling - and since Grandma & Grandpa are here, mama gets to play in the garden for a little while. All is quiet and well (knock on wood - mama's favorite pasttime these days since she's so superstitious) in the Sammy-monkey household.
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We have the smelliest baby ever. I kid you not - he's chock full of gas. And it's not like we get any warning - he's definitely the "silent but deadly" type. Occasionally, even he'll get a whiff and make a face like, "Whoa! Who did that?" But he's still too little to try to blame it on the cats or on dad or the elephant that ran under the chair (name THAT reference!), so we all know it was him. Still, you just don't expect something that awful to seep out of something so sweet and small.
He smiles, laughs and coos now. I don't care that the books all say he shouldn't be doing half of these things for another month or two. OUR child is a prodigy. And yes, I know every parent says that, but ours really is. And yes, I know every parent says that too. But did THEIR kid mimic sound at 7 weeks? I doubt it! See? Prodigy.
Gassy, but a prodigy. We're two lucky parents, let me tell you.
(On a more serious note: he's surpassed the 8lb mark, our little Chunkmonkey. He's put on almost two pounds in the month that we've been home! We're allowed to go out in public now - so we took him out to lunch today, during which he decided he needed to wake up wide, join in the fun and EAT RIGHT NOW. He loves Chuck Mangione's "Feels So Good", insisting on playing at 5:30 in the morning, watching Sports Center with Daddy and when Mama makes an ooo-ing sound at him. He does not like, however, the snot-sucky thing, the camera flash, tummy time, a wet diaper or having to wait for food. All clearly signs of a prodigy, if you ask me.)
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Hands up, baby, hands up! Give me your love, gimme gimme your love, gimme all your love... all your looooooooooooove -
or alternately, and less embarrassingly,
I came to get down, so get out your seats and jump around.
Jump around, Jump up Jump up and get down!
By the way, did you know you can turn just about anything into a song to the tune of Frere Jacques?
Stinky Sammy, stinky Sammy, how are you? How are you? Are there poopies, are there poopies, in your pants? In your pants?
Yes, this is how I spend my days. :-)
We're here. Exhausted, but here. Doodle's been going through a growth spurt, which means he's eating every hour to 1 1/2 hours, which translates into no sleep for mama and daddy. And he's getting his voice back (the ventilator went right through his vocal chords), which means that adorable little peep is now a full-fledged wail when he wakes up starving (which is hard to believe, seeing as that he had just pounded a good ounce or two just seemingly moments before). He's discovered that his hands are, in fact, his, and he can make mama feel awfully guilty when he shoves his fist in his mouth because mama apparently just can't get the food fast enough.
So I'm sure we'll update more when we come through the other side of this and he goes back to a normal routine where we have more than 15 minutes to gather our thoughts - and make another bottle.
Otherwise, yup, he's still so amazingly cute it almost hurts. :-)
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Revelations about mamahood:
The fact that the diapers you love are no longer being made will suddenly become the biggest crisis in the world. And since your world doesn't extend much beyond your front door these days, you can legitimately say, this is the biggest crisis in the world.
Babies don't care about morning breath, coffee breath, the fact that you haven't showered or that you can't sing to save your life. In fact, these are the very things that make your baby recognize you from all the other mamas in the world - or at least you can tell yourself this when you realize you haven't washed your hair in four days and your shirt has three different feedings of dried spit-up on it.
You will not bat an eye at spending a crazy amount of money on the latest, award-winning mentally-stimulating mobile or at handing over even more money to some stranger on the other side of the country for the very last batch of newborn-sized Seventh Generation diapers in the world - but you will spend five minutes in the yogurt aisle trying to decide whether or not it's okay to pay an extra thirty cents for the soy yogurt instead of the regular yogurt for yourself.
You will need to occasionally force yourself to call your child by his given name, lest he grow up and fill in his college applications with "Master Doodle Muffin the first".
Things I will not do: ask my baby permission to touch him, like the woman on the informative "infant massage" TV show said we should do. He's four weeks old, what's he going to say? Sure, mama, and could you warm up the lotion first this time? And while I cursed about the silly "must-have" items I read about before he was born, let me tell you this - I am all over the baby-wipe warmer. It sounds silly, but it will break your heart to hear the curdling scream when you rub cold wipes on your baby's bum at three in the morning - not to mention possibly wake him up, thus increasing the amount of time before you get to go back to sleep. I'm just sayin'.
It's taken me two hours to write this out, and he's crying again, which means at least another hour before I can hit that post button. Revelation: it will take you fifteen times longer to do any normal things anymore - but really, you won't care one single bit.
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