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
We are home!
It was one hell of a rollercoaster week. In case you're just checking in, Sammy went in for a routine cath to close the fenestration and ended up with emergency open heart last Saturday. (His fourth open-heart, if you're keeping count!) He came home on Thursday, just 6 days after open heart, and you'd hardly know what he's been through.
Before all of this, Sammy's oxygen saturations were high 50s/60s. His sats were hitting 97 when we left the hospital on Thursday - he is PINK! For the first time since he was born, Sammy's lips, fingers and toes are pink, not purple. (Though, I will admit, I'm so used to his purple-blue hue that pink seems pale!) His appetite is amazing - he's gained 2 pounds since he went in for the cath over a week ago. And his energy level is through the roof! You can tell he feels so much better - he doesn't gasp for air and he doesn't slow down. It simply amazing.
I will eventually get around to summarizing the past week, but I think that I am still in shock and haven't quite processed it all myself. It still feels so surreal, especially since we've spent the four years since his diagnosis settled into the idea of three surgeries. It was a known quantity in an uncertain CHD world... so to have that idea shifted with little time to prepare emotionally - well, it's been an interesting week.
Comments (3)
I can't begin to express our gratitude for the love and support of so very many people the past few days. I think I'm only getting glimpses of just how far-reaching Sammy's story really is, and we're touched at how many people have taken time from their lives to pray for our little man and our little family.
The past few days have definitely been trying! I haven't had the energy to sit down and write full posts, but it's been a rollercoaster - a few steps forward, a few steps back. But right now, we're out of the CICU and settled on the floor. We're starting to see pieces of Sammy's personality again, which is so comforting for us. I think the hardest part of the post-op period was seeing Sammy so very depressed. Even with as much as we try to prep him, none of us were prepared for this. And for a 3 1/2 year old, even one who has been through surgeries before, this is a very difficult thing to wrap your head around - especially when you were planning on being home days ago.
Right now, we need the pleural effusion to dissipate; he's on oral diuretics to help with that, and they'll be doing regular x-rays to make sure they're working. He needs to get up and walk; there's a playroom down the hall that he really wants to play in, and the plan is to get him there tomorrow. He needs to eat and drink, and there's little we can do to help him with that. He did have a few bites of fries and a couple of Reese's Pieces, but he's just not ready to eat. Maybe once his spirits are up...
I've been compiling pictures of love and support from people all day. If you'd like to add yours to the page (I'll get it up soon enough), please email it to me at erikarenee@gmail.com. Sammy loves seeing everyone waving or holding signs wishing him good things. You can see what I've gotten up already at Get Well Sammy!
Some other places for more immediate updates: twitter, flickr, and if I know you, I'd be happy to connect on facebook as well.
Thank you again - we couldn't do this without the amazing support network we have. We are so very blessed.
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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!
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NOTE: Most recent updates will appear at the bottom of this page, unless there is something that warrants its own post.
As of 8am - here's what's going on:
- Sammy still hasn't eaten, but he has thrown up several times. They've given him Reglan and Zofran and some Zantac to help with it. This morning's theory is that he wasn't having the cardiac output he needed to get his stomach moving, so they began pacing him again. The good thing is that they usually see an increase in drainage when they pace, and Sammy's output stayed about the same. He's near (or in) the range that's acceptable for reabsorption, so his drainage tubes might not be necessary for much longer.
- However, even if he does get hungry, he can't eat for at least a few more hours because they discovered a pneumothorax after doing an xray this morning. This is an air pocket in the lining of the lung, and it means Sammy will need to have another chest tube placed to get the air out. We're hoping that it will be done as soon as his 4 hour no-food-water limit is hit - around 11. (My happy thought is that they will take the drainage tubes out when they put this one in, but not getting my hopes up.) They will sedate him a bit and give him local anesthesia when placing it. Do I need to tell you how unhappy mama is about having to put him through something else? I know it's necessary, but really - my poor little boy.
- The hope is that once the pneumothorax is taken care of, he'll be able to expand his lungs better and that his sats will go up again.
- He's still in junctional rhythm, though I believe they're seeing more sinus beats in there.
- He still has the line in his neck. When I left last night, his nurse had talked of taking it out once she drew labs this morning. Now? Still in. And of all the lines, I hate this one the most.
My concerns, really, lie with Sammy's comfort. These are bumps - annoying bumps, but from my understanding, not bumps that cause a serious concern about his heart. They're not uncommon. But still - they are things that are potentially keeping us from getting to the floor, and while I know we don't want to be there any sooner than Sammy's body is ready for it, he is getting very tired of being in the bed and often asks to get down, to go somewhere else. When we're on the floor, we can take him to the playroom for a change of scenery and get him moving a little bit, maybe get his spirits up a little bit. But each of these bumps potentially keeps us in the CICU even longer, and since I was told the average post-op CICU stay is 1-2 days and we're on day 3 with day 4 looking pretty likely...
Ugh.
Updates:
2:30pm: Sorry we've been lax on the updates. Aside from getting the chest tube put in (a "pigtail") and the line in his neck out, it's been pretty quiet. They did an xray after and it looks like the pneumothorax is gone. WOO HOO! He's still really uncomfortable, as one would expect, but wakes every so often and is starting to talk more. He downed a juice box and 5 ounces of milk and has kept it down so far, but no solids. Still, he's getting calories in him finally. Both drainage tubes are in, though his drainage has slowed considerably. His sats are in the low 80s, even after dropping him from 3 liters of O2 to 1 liter. Yay!
He's still on the pacer, but now it's just maintenance. They've got it down to 70 and he's hanging right about 100 on his own (so it'll kick in if he drops, but otherwise it's just hanging out). Even better? He's back in sinus rhythm! Woo hoo!
We're in the CICU at least for tonight (our nurse said there's been no talk whatsoever of the floor for him - I plan on bringing it up to the doctors at rounds and put the bug in their ear about pleasepleaseplease maybe possibly moving us tomorrow). His draining has slowed so much and he's pacing on his own - the two things really keeping us from the floor. Otherwise, Sammy's sleeping a lot - partially from the sedation from the new tube and partially because he's just wiped out. Quiet is good!
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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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It took some serious begging and the absolute promise that we would go no further than the hotel across the street for the night, but they discharged us. We'll keep an eye on him for the evening, and as long as he looks and is acting fine in the morning, we'll be home before lunch.
WOOO HOOO.
Can I tell you how ridiculously impossible it is to get a 2 year old to lie absolutely still for SIX HOURS post-cath? Or how thrilled I am that we had a nurse who caved into our requests for a wagon to wheel him around in? Or how wonderful the staff was when we snuck into the patient bathroom with a flashlight to entertain Sammy for just a few more minutes?
Do I need to even begin to tell you how happy I am to be in the hotel and to have the cath behind us?
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The doctor just came in to let us know he was all done. He's fine and we should be able to see him in about 45 minutes.
Of course, as soon as the door opened and I saw a white coat, I went into cautious panic mode. Here's how the beginning of the conversation went:
Hi, I'm Dr. So and so, I did the procedure on your son, I'm sorry -
And I panicked for a few seconds until she finished up with - I wasn't there to meet you beforehand.
HELLO! You NEVER start a conversation like this with "I'm sorry..."!!!!!!!!!!!!
Sammy's cardiologist came in to talk to us, told us Sammy's a great candidate for the Fontan - his pressures are great, his ballooned aorta is one of the best developed ballooned aortas they've seen, everything looks fantastic. They did have to coil off one collateral artery off the aorta, so it's iffy as to whether or not we get to go home today. They're currently applying pressure to the entrypoints, and once he's all settled, we get to go be there when he wakes.
Phew. Step 4 out of 5 in this journey done - Norwood, pre-Glenn cath, Glenn, pre-Fontan cath. Now, one more step ahead of us and hopefully the last one for a very, very long time.
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Sammy's back for the cath right now. It took a LOT of sedation to make him mellow out, and even then, they told us it took a long time after he was back there to knock him out. It breaks my heart to think that he was awake - even if he won't remember it - but that he was awake and we weren't there with him. I promised him we would be there. I'm having a hard time with that.
Update from the nurse - which was so much later than we expected (and only because I was starting to panic and made Jay go ask) because they were having such a hard time getting him to fall asleep: they have a cath in each leg and in one shoulder. They're currently taking pressures and pictures right now, and then they'll look for collateral veins they might need to coil off.
We expect another hour or two before they're done. We'll update when we can.
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Pre-cath fun done! There were the expected amount of hysterics (Sammy's and mine), but he really was such a brave little man. We were sent first for x-rays, then blood work, then an EKG and an exam. He even did well while we talked over what to expect tomorrow with the Fellow, learning to blow bubbles and playing with his Blues Clues toys.
We were done by 11, which was nice. We had lunch, Sammy got his fill of Disney TV in the cafeteria (what hotel doesn't have Disney and then charges $10 for a 24-minute On-Demand episode of Mickey Mouse Clubhouse?!?!?) and has been napping since 1:30.
We report back tomorrow morning at 7am for his cath. They expect it to take 1-3 hours. Jay and I will be able to be with him until he's sedated and ready to go, and then we will be there when he's waking. Since we're first case, there's a better chance we could go home tomorrow, but I'm not getting my hopes up. It all depends on whether or not they'll need to do work while they're in there.
Our friend Shannon wrote up a little bit to help explain what's going on:
The short answer is the heart cath is being done to determine if Sammy will be a good candidate for the third of the three staged surgeries used to treat (not cure) HLHS. The first ("Norwood") is done shortly after birth and is mandatory; the Glenn (aka bi-directional Glenn, or Hemi-Fontan) is the next phase , and Sammy's had that already as well. The Fontan is the completion phase of the Glenn. If you're short on time, just read http://en.wikipedia.org/wiki/Fontan_procedure, specifically the "Indications" section. It explains why a cath is done prior to it, as well as why the procedure's used at all.
Your thoughts and prayers and positive energy really do carry us through. Thanks so much!
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We'll be headed into Boston shortly for Sammy's heart cath. Plan looks like this:
- Hotel tonight, pre-cath workup (xray, bloodwork, EKG, who knows what else) tomorrow at 8:30am.
- Hopefully done with that in 4-5 hours. If Sammy's up to it (and we are too), we might make a trip to the Aquarium. My folks will make it into town around dinnertime.
- Thursday - cath day. We don't know a time yet. Apparently they will tell us that tomorrow. Cath, I believe, should take 3-5 hours.
- Thursday afternoon/evening will look one of two ways: if the cath was simply exploratory and they didn't have to do any work AND it was early enough that they can observe him for a few hours after he wakes up and everything's fine, they'll send us home. If the cath was later in the day, they had to do work, or they want to observe him longer, they'll keep us overnight.
- Either way, we should be back home Friday afternoon, universe willing.
I'm a wreck. Jay stayed home today to help get ready because I'm just so overwhelmed, I don't know where to begin.
Please keep Sammy (and us) in your thoughts the next few days. We could use the positive energy. Thanks.
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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We're headed home!
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Yup, we're still here. Rumor has it, though, that we'll be headed home tomorrow as long as his morning xray & bloodwork all check out okay. He's definitely getting back to his old self, playing, squirming and laughing up a storm. We've also had a couple of firsts since we've been here.
Sammy sat up on his own! I took him to the playroom, and sure, he only maintained his balance for fifteen seconds or so, but he's getting there!
Even better? This:
We had planned for a little "celebration" before we left. Up until now, Sammy's only ever had breastmilk, formula & rice cereal. Since he's taken to latching on to the bottom of our Starbucks cups and sucking off the water, reaching for whatever we're eating and getting pissed if we don't give him any, we thought we'd celebrate making it through the surgery with his first taste of "real" food - BANANAS!
There's a little video of him eating here. It's pretty dark and hard to see, but we only had our regular digital camera with us, so it had to do. He couldn't get enough of the bananas - he would grab for the spoon and shove it in his mouth. When we would come at him with another spoonful, he'd go full-body excited - arms and legs kicking and waving, eyes really big, and little excited sounds coming from his mouth. He LOVED eating those nanners!
So while we were really disappointed we didn't get to go home today, it turned out to be not all that bad. :-)
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Still truckin' on along. Sammy's feeling and feeding much better. They're going to remove the pacing wires today, and they've started the discharge routine - xray, blood workup and EKG this morning, echo likely tomorrow morning. The only thing really keeping us here at this point is the dosing on his captopril (for his blood pressure). Once they figure that out, we should be heading home! We're still hoping for tomorrow, but like I've said - we've learned not to get ahead of ourselves around here. As long as he keeps going as well as he has been, we're happy. One day at a time.
Even better? Our surgeon and our cardiologist had a meeting of the minds and declared that the heart rhythym/heart rate issue is NO LONGER AN ISSUE. Sammy's been staying in the 90s - both awake and asleep - and keeping a nice sinus rhythym. Clearly it's something they'll monitor over the coming months and years, but for now? We're good to go!
We got the okay from the nurse to scoop Sammy up and take him off the floor. So we're going to grab some lunch and take him outside into the courtyard for some much needed sunshine and fresh air - all together, as a family. Woo hoo!
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And we have achieved step-down!
We're in a room all by ourselves, which means we can pick up Sammy all we want, since he no longer has any lines in, just surface monitors. We can even take him for a walk around the floor if we want! Sammy's perked up considerably, and is happily playing with his rings and toys in his crib. If everything goes as smoothly as it has the past two days (knock on wood!), we could be home on Wednesday. Knock on wood.
And by the way, is this not the cutest kid in the world? Ok, I know, the universe, but I didn't want to seem cocky about it. ;-) Happy five-month birthday, little man. We love you more than anything.
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>He's eyein' that door...
So Sammy is LINE FREE! They took out the arterial line and the atrial line just a few moments ago. I got to skip around the floor with him, showing him off to all the nurses and singing, "We're goin' for a walk! We're goin' for a walk!"
He's still got the pacer wires in, and will when we go to the step-down floor - WHICH SHOULD BE TODAY! His heartrate stayed in the 90s last night... now, in all fairness, the kid woke up every two hours screaming his sweet little head off, so he never really got into a deep sleep, but they'll continue to monitor things in step-down anyway.
Because, oh yeah - did I tell you? - we should be going to step-down today.
Keep those prayers and wood-knockin' a'coming. It's doing good things!
(Edited: The head cardiologist just came in to take a look at him and to tell us - TO THE FLOOR WE GO!!!!)
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So we're still trucking along. His heartrate is staying in the 70-80-90 range, which is making us all happy. I asked his cardiologist - if we didn't have the heartrate concern - based on his recovery from the Glenn procedure alone, would we be in step-down by now? He said we would be, which means that he's recovered nicely from the surgery. Yay!
His cardiologist also said that he wouldn't do a pacemaker unless it was absolutely, absolutely necessary, and that he'd rather watch him for a while to make sure the heartrate wasn't going to be an issue. Apparently, once someone's got a pacer in, it's pretty much a pacer-for-life deal, so he doesn't take a decision like this lightly. His surgeon agrees... so while we're not out of the pacemaker woods yet, we're a few steps back from having one put in than we were a day or two ago. Yay #2!
AND... if Sammy continues with these same numbers through the night and early morning, we could be moved to step-down tomorrow evening. Yay #3!!!
AND... in a bit of normalcy, Sammy had a complete blowout with some of the nastiest, nastiest poop. While I was holding him. BLECH. So he got a bath, which was much needed. We also got to hold him quite a bit today, which was really, really nice. He's talking a bit more now, too - working his way back to our little boy.
Knock on wood. Again, for good luck. And again for not tempting the fates by wishing for good luck. Hell, just spend the next few minutes knocking on wood, okay? Thanks. :-)
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Hi guys.
Sammy's still hanging in there. He had a few fits last night where he's clearly VERY unhappy, which is uncharacteristic for him, but in all fairness, the kid just had open heart surgery not even five days ago. On the other hand, we've had a lot more playtime out of him, and a lot more smiling, too. High and lows - but they're his highs and lows - not morphine's, not any other medication's... alllll Sammy.
They stopped the isuprel, which was keeping his lungs from spasming and keeping his heartrate elevated. They also took him off the pacer, so his heartrate now is all his own. The electrophysiologist came in to look him over this morning and started tossing around the real possibility of a pacemaker, at which point the head cardiologist (whom we LOVELOVELOVE) popped his head in and said, "Sammy will tell us what he needs." Even Sammy's surgeon said that while being in the 60s isn't optimal, he's fine with it as long as it only happens when he's sleeping. The good thing? So far, he's staying in the 80s & 90s - even while asleep!
Our feeling is this - if he stays in the 80s & 90s (even if he occasionally slips into the 70s while he's sleeping), they'll probably keep him in the CICU for another day for observation. Our hope is to be moved to the floor by Tuesday if they're happy with his heartrate and we have no other complications presenting themselves. (Knock on wood. Everyone. Now. ;-)) Though, we've learned to take things day by day - so our goal is to have another uneventful day like yesterday, upping his feeds, playing a little bit, and keeping those heartrates nice and happy in the 80s, 90s - and dare I even hope for it? - 100s.
I apologize for not returning emails/phone calls. All my energy is really wrapped up in Sammy right now, and I really don't like leaving his room all that often (we can't use cellphones here). Thanks for understanding.
Edited: He's in a deep sleep nap, and hitting high 60s. :-(
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I woke up this morning to the munchkin staring at SportsCenter. He threw a hissy fit when I moved the tv, too!
He had a good night (knock on wood). He got some more morphine around 4, but hasn't had any since. His blood pressures are still low (yay! though we'll see what happens when they wean him off the isuprel) and he's holding high 70s sats without supplemental oxygen. His surgeon came by, and the general consensus seems to be that his episode last night was "impressive" - he talked about how ill Sammy got & how fast that happened - and then how fast he bounced back. He also said that they don't usually see bronchial spasms like that in kids post-Glenn, so he's not sure what precipitated it.
Sammy coughed up some nastiness this morning, which is just what we want. Get that gunk out of his lungs! He also took some water by bottle - we couldn't figure out what the fussiness was, and it turned out he just wanted something to eat! Yay! He was playing a bit and even smiled his huge grin. He's napping now on just Tylenol - the lower blood pressure means less pressure in his head when he freaks out, which means his headache doesn't go through the roof, causing more freak out and an awful cycle. This is happy.
So today - we want uneventful. Lots of coughing and gunk-releasing. Stable blood pressures and good heartrate when they take him off the pacemaker (otherwise talk of putting in a pacemaker picks up a bit). Uneventful. So send some boring, smiley, playing-with-the-rattle vibes our way if you can. Thanks. :-)
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Today didn't go as smoothly as we had hoped. Sammy is still in a LOT of pain, and we've had to give him a few doses of morphine. His blood pressure goes through the roof when he gets upset (which, unfortunately, is pretty much whenever he's awake) and he's VERY hard to settle.
We did get to hold him today, though, which was wonderful. He calmed down in my arms and I sat with him for over an hour. They took out his chest tube and cath earlier today, but he's still got the arterial line in. They weaned him off the pacer with the understanding that his heart rate will probably be in the 50s-60s, but kept it on so that should he drop lower than that, it'll kick on and bring him back up. They're keeping a close eye on it, and while it's a "distance out there", the future possibility of a pacemaker has been discussed. For now, though, they'd like him to stay stable in the 60s-70s - and if he does, I think they'll just keep an eye on him over the next few months to make sure his body can handle a low heartrate.
We're still in the CICU, and I wouldn't be surprised if they kept us tomorrow night too. He's still so uncomfortable. They've switched him from morphine to codeine, and weaned him off the IV meds for his blood pressure & started him on oral captopril. After the codeine, he started playing a little bit with his rattle, and he's taken a few more ounces of food by bottle, too.
We're doing okay. It's been a long few days. I'm hoping Sammy has a real turnaround and starts feeling better soon, because those screams, those sad eyes, that cry - and not being able to help him - is really breaking my heart. I just want my little baby to feel better again.
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He's awake!
Of course, he's awake and in significant amounts of pain, which causes him to scream, which causes even MORE blood to rush to his head, which is what's causing a lot of the pain in the first place, which causes him to scream more, which causes his blood pressure to go through the roof... see a problem here?
So he's on little mini-shots of morphine - just enough to take the edge off. The night started out rough with a couple of these screaming episodes, but then he WOKE UP around 5 - eyes wide open - and SMILED at me. His eyes were the clearest we've seen, and he was looking around, taking it all in. He cried for a little bit, but we sat him up and I cradled him in my arm (the surgery redirects the blood flow to the head, so sitting him up helps to drain some of the pressure). He is PINK - the week or so before the surgery, he was getting progressively bluer. But nope - he's a dark pink all over - and man, he turns PURPLE when he screams. Before this there was very little change in his coloring, even during a hissy fit, so this is strange to see.
I made an exception to the no-TV rule we like to think we follow but never really do, and he watched Breakfast with Big Brown Bear (or whatever the hell that show is), ate about an ounce & a half, read some of Pajama Time with me, and then went back to sleep.
He woke up with the fuss-fit again, so more morphine and he's dozing. His chest tube is scheduled to come out today, along with the Foley cath and possibly another one of his lines (I'm not sure which one it is). They're still concerned about his heartrate - under the pacemaker, he's only pushing low 70s while he's awake. The hope is that once more fluid drains from around his heart and his body settles into his new circulation, so will his heartrate. So we'll see.
Please, if you have a moment, pray/meditate/send positive thoughts that his heartrate heals to a better, higher number on its own and that his blood pressure comes down a bit and stays there. We'll update if/when things change today, or else we'll post something later on tonight. My guess is that we'll be spending another night in the CICU - which is fine with me. I want him all better before they send us off.
As always, thanks for your love and support.
(P.S. There are a few more post-op pictures on flickr - we're still trying to decide whether or not to put up the immediate post-op pictures. They're not as rough as the post-Norwood pics, since his chest is closed, but they're still kind of hard to see.)
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So today didn't go quite as planned.
Something happened this morning - Sammy had an arrhythmia, and it concerned the staff. They weren't sure if it was a reaction to the morphine, if he had gotten too riled up through the sedation or what... but toss in that his blood pressure was ridiculously high for a good while and the fact that he was still retaining too much fluid, and it was a bit of a rough time. I'm still on edge and haven't been able to come down from it.
He's still a bit sedated, still asleep most of the time - waking only a few minutes at a time, uncomfortable and quite out of it. They upped the diuretics and he's been peeing like a champ. He looks much more like himself. We're hearing that he's had a good turnaround - 180° from this morning! Our surgeon just assured me that he looks good. That makes me feel a bit better.
One concern we're having - his heart rate is really low. He's always been on the low side - he should be up around 100, at least, and resting now, he's dropping into the low 60s, high 50s. (At home he would hover in the 70s when he was asleep, and it never quite sat right with me.) They had pacemaker wires in, as a normal post-surgery precaution, so they hooked him up and they're keeping him at 100. (It was wild watching his heart rate on the monitor adjust to whatever the doctor twisted the little knob to. Want 85? Here you go! Very, very weird.) The surgeon said he didn't think we'd need to do a pacemaker long-term (knock on wood), but that he wanted the heart rate specialists to come by anyway and do some tests.
Anyway, he's still got his drainage tubes in, obviously the pacemaker wires - but the good thing is that he's off the oxygen and holding 80s on his own. (Remember - most of us have oxygen saturations at or about 100. He was dipping into the mid-high 60s pre-Glenn.) His blood pressure is coming down and when he does wake up, his eyes aren't as glassy. They last gave him a touch of morphine around 4pm when they took out his central (jugular) line, so he's on Tylenol for pain. He's taken a little bit by bottle, but we're still waiting for him to wake up to really start to eat. We were told 1-2 nights in the CICU, but I think we're looking at 3.
I'm exhausted. It's a different exhausted than I was waiting for the surgery. This is a bit more of a rollercoaster - I want everything to automatically be okay post-op, and that's not how things work. There are little kinks and concerns, and I walk around on edge using all that energy watching his numbers and asking the doctors and nurses all sorts of questions, just so I know he's okay. I think I'll be better when he's awake and a little more himself.
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Extubated!!!!
Jay stayed with him last night and I stayed at the hotel - the first night in months that I didn't have the surgery hanging over me. I was so exhausted, I slept through Jay's phone call at midnight to say goodnight - and I had the phone right next to my head!
Jay called around 6 this morning to tell me that they had extubated him. When I got here, I was able to see that sweet little face! He's starting to fuss more, though they've got him on morphine and tylenol - last night they gave him , chloral hydrate which should have lasted about four hours. Him? Lasted two. He's fighting the sedation, just like last time. :-) He's bringing his hands to his mouth - a clear sign that he's awake enough to be hungry! Our nurse, Taury (whom we ADORE - we had her last time), said we could try to give him some water around 10. Whoo hoo!
They expect to remove his lines (yay, yay, yay - I HATE them), pacemaker wires and the drainage tube from his chest sometime today. At that point, he'll be left with his IVs - one is his hand, one in his foot. He's still puffy, but not nearly as swollen as yesterday.
(And... I just overheard that we're headed to a private room - still in the CICU, but we'll have a door!)
His blood pressure is still really high, and since this surgery redirected the blood flow to the top half of his body, Jay said he turns purple when he really fusses. They increased the nipride, but his body needs some time to adjust to the difference in pressure. He'll go home on another medication to help with that - most likely captopril. (He's currently on baby aspirin, lasix and zantac at home.)
We'll keep updating as things progress, but we're hoping the next few days are pretty quiet, just getting him comfortable, awake and back to normal.
As always, thank you so much for your support. Your comments, thoughts, prayers and love truly do carry us through this all.
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Ok, he's out - and we got to see him!
He's wicked puffy, and he's still sedated, lots of lines (central & arterial - which I HATE - it's a line in his neck), on the ventilator, one drainage tube - but his chest is closed and his numbers are right where they want them to be. The plan is to let him wake up gradually on his own during the night, see how he breathes over the ventilator and if he does well, extubate him hopefully by morning. Once he's awake, breathing and they're okay with it, he can eat (considering he hasn't eaten since 5:30 am today, I imagine he's going to be pretty grumpy). The lines should be out tomorrow as well. If all goes well, we could be on the step-down floor in the next few days.
Thanks for your thoughts, love and prayers. Keep 'em coming - we're not out of the woods yet, and seriously - I truly believe all that positive energy has really helped him. Thank you.
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Updated 2:20pm: They gave Sammy a cocktail of mind-numbing drugs around 1:30 - some tylenol, versed & ketamine. He was in a nice dopey state when they took him from us. We, on the other hand, weren't nearly as good. I didn't pass out, though, I'll give myself that much. I definitely came close a few times.
We'll get updates as things go along - we got the first just a few minutes ago to let us know the surgery went underway at 2:15.
I'm not quite sure what to do with myself while we wait.
Updated 3:15 pm: They just called with another update. His chest is open and he's on bypass. They're going to start the repair... next update in about hour and a half.
Thanks for all your thoughts and prayers.
Updated 5:35 pm: Us again.
Two hours without an update and I was on the verge of a breakdown. Came back over to ask the nurse to check in. They're warming him up to take him off bypass.
Hopefully we'll be able to see him by 8... that's my hope.
Updated 6:00pm: Off bypass!
They're closing his chest now, and the surgeon will be out to see us soon. After they're done with him here, they'll send him up to the CICU. The nurses take about an hour to get him settled in, and then we can see him.
I still feel like I'm going to either pass out or throw up, but at least I feel a little reenergized. I thought I would have a hard time with seeing Sammy with all the lines, IVs and monitors, but now I just want to see him and know he's okay. The rest seems manageable now. He'll be intubated (on the ventilator) and sedated for a while still, but I will be able to kiss those toes and those lips. I'll take that right now.
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We're sitting in the inpatient admitting waiting room :-(
we were bumped to the second case of the day which means that we're waiting for the first surgery to finish -- waiting is definitely NOT what we need right now.
Sammy is fighting sleep and hunger pains -- he hasn't had anything real to eat since 5:30am. Mommy and Daddy just are -- numb, tired, on auto-pilot.
We'll update after he goes in.
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Pre-op went okay. Sammy did fantastic with the xray, smiling and flirting like a champ with the nurse. The bloodwork was a completely different story, and it was just as awful for us as it was for him. That scream, that cry - makes me, on such a primitive level, want to seriously hurt whomever is causing my baby to scream like that. I think Jay might have claw marks where I dug my fingers into him because I couldn't make them stop. It was awful.
Jay was awesome enough to go through the consents without me. Essentially, he got to listen to the surgical fellow explain just what it is they're going to do to Sammy, and then sign a paper saying that we agree to let them. If I had had to stay, I think I would have passed out or thrown up or ended up curled up in a corner, rocking back and forth. I'm afraid I've gotten a bit of a reputation with the doctors for being a nervous, anxiety-filled blubbery mess.
Anyway, we're in the hotel, Sammy's sleeping, we ordered room service and the glass of wine is starting to kick in. They bumped him from first case tomorrow to second, which means we have to bring him in for 10. We'll hopefully be able to see him by 5-ish. I've never been away from him for that long. I'm hoping I'll be able to come back here and curl up in a little ball in bed, sleeping off the anxiety and waiting for the phone calls to come in from the nurse, letting us know he made it through each stage okay.
I go back and forth between acceptance, denial and plain old freaking out. Part of me really wishes denial would just take over and create this perfect little bubble around me, protecting me until he's out and I can hold him and know he's okay. What gets me the worst? This sweet, sweet baby has no idea what's in store for him tomorrow. He's sleeping peacefully while we're nervous wrecks, oblivious to what's about to happen. It makes me sick thinking about it.
I want to take him and run very, very far away with him. I know this is what's best, what he needs to live, that this will make him better. But it goes against every cell, every fiber of my being, to willingly give him to the doctors tomorrow morning.
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We leave first thing in the morning for the hospital. We have pre-op tomorrow - paperwork, meeting with the surgeon, xray, bloodwork - and then Sammy's scheduled to be the first case Wednesday morning.
For those of you unfamiliar with what's going on - Sammy was born with a group of heart defects that places him somewhere in-between Hypoplastic Left Heart Syndrome (HLHS) and Double-Outlet Right Ventricle (DORV). (His official list is mitral atresia, hypoplastic left ventricle, coarcation of the aorta, atrial septal defect (ASD) and a large ventricular septal defect (VSD).) He had his first surgery, the Norwood, at 4 days old; this Wednesday, he'll have the second of three surgeries. This surgery is called the Glenn; there's a good explanation of it here.
Please keep Sammy and his surgeon, nurses and doctors in your thoughts and prayers over the next few days. We'll update the best we can as often as we can. Thanks.
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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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Yesterday: We're here. We were admitted around 1 this afternoon. They did an xray and an EKG, throughout which Sammy screamed his head off. He finally calmed down when we got up to the floor, but he's been off all afternoon. Can't blame the poor kid - we're in a hospital. All the sounds and smells can't bring back good memories, I'm sure. He finally fell asleep on my chest for a while, all decked out in his Red Sox gear with his team kicking Yankee butt, 4-1.
We're doing okay. Oddly, I'm comforted being here. At home, I'm always on edge - what does this cry mean? Is his heart beating right? Here, on monitors, the control freak in me feels safe. And here, should something happen, I know he's in the best hands and those hands are just a short yell away. When we were here after he was born, after his first surgery, I almost didn't want to go home. We're taken care of here. He's taken care of here.
On a happy note, Sammy broke the 11 pound mark and now weighs a chunky 11lb 2oz and is 24 inches long. That's almost a FIVE POUND gain since we came home two months ago. This is fantastic for a heart baby!
Knock on wood.
Today around 11: They took Sammy into the cath lab this morning around 7:30. We didn't sleep much last night, but Sammy ate like a champ yesterday, sucking down almost four ounces more than he normally does - and he slept like a, well, baby. Jay sat with him this morning until he had to go in for anesthesia -- he wasn't the happiest camper considering that he hadn't been allowed to eat for the past 4 hours.
We got an update about 40 mins ago saying that he's doing really well. They have him under sedation but he's breathing on his own and not on the respirator. They've gained access to his heart and are running some hemodynamics tests before starting with the pictures and balloon dilation.
Today at 12:30: They called us to let us know Sammy was all done. We're sitting with him for a while in the cath lab while he comes out of the anesthesia. He's groggy and unhappy about being sedated, and he keeps fighting against it. His cries are kind of funny - they're normal cries sort of dragged out over a longer, medicated time. He hates the IV board on his hand and kept whacking himself in the face, so he's swaddled all snug while they monitor his heartrate, oxygen sats and respirations.
Apparently, they had to do the ballooning a couple of times - they weren't happy with the first few attempts. From what we know right now, everything went okay - I guess we'll see what the next few weeks bring. If the stretching didn't go as hoped, it's something they might need to work on during his next surgery (the Glenn) in July.
They're going to keep him for observation, and as along as he's doing well, we should be discharged tomorrow.
Thanks for keeping us in your thoughts.
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At almost 3 weeks old, I FINALLY get to snuggle with him - minus wires and tubes and monitors - on our couch. Not some pull-out makeshift bed with hospital blankets, but OUR couch. In OUR house. His house.
This makes us all very, very happy.
We were discharged around noon. Sammy wasn't a huge fan of the car seat at first, but I think once he realized we were leaving, he was more than okay with it. Jay lugged all our stuff out to the car only to find out that the battery was dead! They managed to jumpstart it, and shortly after we were on our way home! Never a dull moment with us, I swear.
Sammy's doing well - sleeping in his swing right now. We're getting settled in - figuring out the routine at home. It's so nice to be able to feed him without fifteen people coming in needing to check this or get that or poke him or somehow otherwise interrupt. Though - it WAS nice having the nurses to change those poopy diapers! ;-)
Thanks for all your love, support and prayers the past few weeks. I'd write more, but we're all so very tired. For now, we need to sneak some rest while he snoozes away in his little swing. Welcome to parenthood!
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Sammy's doing really well. He's eating like a champ - both bottle & breastfeeding. Jay just fed him and he sucked down the whole thing. He's gained a little bit - but the key is that he's eating AND gaining. He's really good at letting us know when he's hungry, too. It's about the only time he cries! (Well, that and diaper changes, but in his defense, it's kind of cold in here!)
He also smiles - and laughs! Our roommate could hear him from the other side of the room, and was amazed at how he was laughing already. And while everyone's just going to tell us it's gas - it's a real laugh with a wide smile. Very cute.
He had two echocardiograms today. Everything looks good, except that his tricuspid valve regurgitation is a bit worse than it was during his first echo after birth. Our doctor said this isn't unusual, but they're still going to monitor it and he hopes it'll be better by the next echo in a few weeks. Overall, he's really happy with how Sammy has recovered.
Today was a whirlwind of doctors and social workers and nurses and everyone trying to get us ready to go home - hearing tests, setting up pediatrician visits & home visits with a visiting nurse, finishing up paperwork and other tests. They had all been told we'd be going home tomorrow, so it was a race to get in everything that needed to get done. Before we knew it, it was 5pm! You'd think that the days in a hospital would drag, but they seem to fly by. Tomorrow we have an infant CPR class, Sammy gets his RSV & Hep B vaccinations and some final check-ups and I'm sure there will be a revolving door of doctors and nurses and research assistants as well.
So hopefully, if all stays the same, Sammy will be in his own crib Wednesday afternoon!
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We're LOVING stepdown! We're sharing a room with another very sweet couple whose child just had the second HLHS surgery. We can pretty much pick up Sammy whenever we feel like it, walk around with him - he hasn't been on the monitors at all today! - and we're pretty much responsible for feeding him, changing him and generally acting like parents - with the occasional nurse popping in on us.
Sammy decided this morning that he REALLY didn't like his NG tube (the feeding tube in his nose) - he wiggled his finger underneath and pulled it out! Our nurse took that as a sign that maybe it was time to move completely to the breast and the bottle. It was a tough day - lots of fighting with the bottle & spitting up - until Jay asked for a different nipple on the bottle with this last feed. Sammy took the WHOLE 45ccs!!! AND, this was after his first REAL breastfeeding!
This is huge. Our fear after the struggles today was that we would need to go back to the NG tube - and then Sammy went and ate like a champ. Feeding is the biggest obstacle now to going home - and tonight was a good sign that we're headed in the right direction!
Otherwise, we're all doing well. Tired, but what parents of newborns aren't? :-)
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It's our Snickerdoodle Buddha baby!
We need to dress him in oversized clothes because of his chest, IVs and other assorted wires, so he ends up looking all buddha-yoda-yogi-like. I pretend to do tai chi with his arms, and occasionally break into a "wax on, wax off" routine.
What a day!
We came into his room this morning and I snuck a peek at the pile of papers on the counter. On the very top? His transfer orders - to STEP DOWN!!! Our night nurse confirmed what we had suspected - we were stuck in the CICU yesterday only because there were no rooms on the floor.
And then the waiting began.
We cleaned the room. We dressed him in new clothes. We took pictures. We sat and waited. And waited. And waited. And tried to breastfeed. And waited some more. In there, Mama had a meltdown because she came back to the IV line - moved from his hand to his head. My little boy has an IV line sticking up out of his head. It took a few hours, but I got used to it -
And at 5pm, we gathered up all our stuff and made our way, finally, to step down!
This is huge for so many things. This means he's no longer considered critical or needing intensive care. This means we're in a shared room with another heart couple - WITH A DOOR WE CAN CLOSE! We have quiet. And most importantly?
We get to play Mama and Daddy to our little boy. FINALLY.
The nurses no longer run to him over every peep or beep. We pick him up when he cries. We change those stinky, slimy diapers. We get to try to feed him. And feeding is our challenge now - we get to take monkey home when we've proven that he can eat and gain weight.
And like the true son of an overachiever that he his, he ate a full ounce of breastmilk from a bottle this afternoon. In his room. In the step down unit.
Oh, happy day!
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Today was pretty mellow. Sammy's been sleeping most of the day, though earlier, they disconnected his monitors and we were able to walk around the room with him, untethered! (We even danced with him to Sweet Caroline, which made the Sox fan dad in the next unit chuckle.) He's down to Lasix (to help with the fluid in his lungs), Reglan (to prevent vomiting) and Zantac (to help with the reflux). They changed his feeds from a constant drip of breastmilk to bolus feeds every three hours. They started him off with 30 ccs over one hour, then 45 ccs over one hour, and now he's taking 45ccs over 30 minutes. He's tolerating them really well, which is a really good sign. He latched on this morning, too, sucking away - though we don't really think he got much. Still, it was a comfort to both him and me to be that close to one another.
We're still in the CICU, though we think it's only because the step down unit was full this morning. We spent last night in the hotel and tonight we're hunkering down in the parent bunks at the hospital - our beds are already made.
Tomorrow, if the night goes well - we should be on our way to step down!
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Mama had a rough day today. We had our hearts ready for moving to step down, but that didn't happen. It's rare that I get my hopes up like that - I've been perfectly content taking it step by step - but I was really looking forward to having a quiet room with more freedom with him. I feel so smothered here, with no privacy and all the noise and people and doctors always all over the place.
Monkey's having some reflux issues. They wanted to wait today out to make sure he didn't vomit anymore - which, knock on wood, he hasn't yet. His lungs are still wet, too, and they're monitoring that as well. They did take out his central line, however, which means it's a LOT easier to simply pick him up from his crib - so much so that we don't even need to call the nurse in to ask if it's okay. Yay! We love our nurse today, too - she let us put some real clothes on monkey - sweatpants that are huge on him and cute little socks. And she's totally encouraging the breastfeeding, even if he is still just hanging out at the boob, looking around and falling asleep contentedly.
Sammy got to meet his Uncle Skip today, too! My brother made the trek from NY for the day just to see the little monkey for a few hours. It was great seeing the two of them together - I remember when my nephew was Sammy-small.
So... we're hoping for step down tomorrow, and since we're staying in the hospital tonight, I'm hoping for quiet Sammy time, even if it has to be at 3am when the rest of the floor is asleep.
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It looks like we might step down tomorrow! I think we could have pulled it off today, but there was a slight setback -- nothing serious, Sammy is just fine.
The key to getting out of the CICU at this point is having Samson's central line removed. This is the last IV he has that goes directly to his heart (his right atrium, to be specific), and that is the last "intensive" thing left. The line does two major things. The first one is measuring the right atrial pressure -- there is an amazing amount of physics going on in Sammy's heart and they don't want to miss a number for a formula anywhere! The second one, and the one that is most important for this conversation, is delivering Heparin. Heparin is an anticoagulant and is keeping any clots from forming in his BT shunt. Now, the hospital doesn't want to send us home on Heparin, and St. Joseph's baby aspirin works just as well. Once they get Sammy on the St. Joe's they can stop the Heparin and take out the central line.
They gave him his first dose this morning.
And, an hour later, in an unrelated incident, he threw up.
It's not a huge setback, but a delay all the same. They couldn't be sure that he had absorbed the entire dose so they lowered the Heparin and we'll try again tomorrow morning.
In other news, the paralytics have completely worn off of Sammy's bowels, and he can add "pooping like a champ" to his other accolades. He's only receiving breastmilk via NG (nasogastric) tube, and they have him on an extremely small rate of 8 cc/hr -- it takes almost 4 hours just to get an ounce! Erika was able to try breastfeeding twice today -- Samson knew he was supposed to be there, but wasn't really sure why. There will be plenty of time for that once we step down.
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It's funny how sometimes it's the little things that make the biggest difference. Being extubated was huge, but the events of yesterday were equally as big but they came in small steps.
Sammy is off of his Dopamine drip! This means that they are happy with his blood pressure and they don't need to regulate it anymore. This also lead to having his arterial line removed! The arterial line was one of the last two direct IV lines to his heart. They were measuring his BP directly through this line, and now they can just take his BP using a small cuff on his calf.
One of the side effects of extubation is some congestion and fluid in the lungs. The ventilator was putting the Sammy's lungs under positive pressure for 6 days. Even when he was breathing over the ventilator it would add an extra little push to each breathe. So, now that he's completely off the ventilator he ned to work a little harder to get a full breath. We've been doing chest PT on his but rapping is back and trying to make him cough. This works his lungs and helps him get the crud up. He's doing really well with it -- he hates it, but it's working. And, on top of this, they were able to take him of of his Lasix drip. He'll still get bolus feeds of Lasix three times a day, but he pees like a champ without it.
Hopefully we'll get a better sense of things today. They just came by for rounds but we didn't catch the daily order. Maybe they'll come to take out his central line today...and then the next step is to step down to the floor!
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And he's off the ventilator. WHOOO HOOOO!!!!
I woke up today like a little kid on Christmas morning. I have my little babyface back! I can kiss those little lips! And what a GREAT 30th birthday present for daddy. And we get to hold him soon - like... in MINUTES! It's been almost a week. A WEEK!
I know it's about the baby steps - but this is a HUGE step. WHOO HOO!!
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According to the Buddha, my teacher, life is only available in the here and now. The past is already gone, and the future is yet to come. There is only one moment for me to live - the present moment. So the first thing I do is to go back to the present moment. By doing so, I touch life deeply. My in-breath is life, my out-breath is life. Each step I take is life...
Many of us think that happiness is not possible in the present moment. Most of us believe that there are a few more conditions that need to be met before we can be happy. This is why we are sucked into the future and are not capable of being present in the here and now. This is why we step over many of the wonders of life. If we keep running away into the future, we cannot be in touch with the many wonders of life -- we cannot be in the present moment where there is healing, transformation, and joy.
-- Thich Nhat Hanh
They took out his chest tubes this morning. Yay! They also took out the tube in his mouth (to help relieve the pressure in his stomach) and put in an NG tube (feeding tube) in his nose. They've even started him on breastmilk. Whoo hoo!
They also stopped the paralytic last night - he started moving around a little bit, but he was still heavily sedated. His nurse stopped the constant morphine this morning and only gives him a dose when he's showing signs of pain. Otherwise, he wiggles his toes and occasionally opens his eyes and looks around, but for the most part, he's still sleeping.
Moving him off the ventilator is on the agenda for tomorrow morning - though they keep telling us that it's all on his schedule - which is fine with us! Once he's off the ventilator, I can start trying to breastfeed him - which means we get to hold him again.
Joy in the little things.
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He's out!
He's still on the paralytic and he's still sedated - but no more open chest! He's got a couple of bandages and still has a bunch of tubes (especially one for drainage), but he looks so, so wonderful.
They'll probably start weaning him off the paralytic later tonight. Jay and I will likely stick around until he starts moving around, so it may be a late night for us. I had a bit of a bad crash earlier, and could barely get out of bed before after a nap while he was with the doctors.
Someone asked if I've been pumping - I am a champion pumper! My milk came in a few days ago, and when things get rough, I'll tell Sammy that I'm going to go make him breakfast/lunch/dinner/a snack, and it makes me feel like I'm doing something for him. It's been good for me - it helps a bit with that helpless feeling. Perhaps it's too much info, but I'm getting about an ounce an hour - so about 3-4 ounces every pump. Not bad for only a week in! They want me to get 16-20 ounces a day, which I'm getting without a problem. Whoo hoo!
Anyway, thank you so much for your continued support and love. Sammy's one week old today - I can't believe it!
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They're set to close his chest at 1.
WOO HOO!!!
They're going to wean him off the paralytic in the hours after the closure, so he should be awake - just heavily sedated - by tonight. And then they're taking out the tube in his mouth and replacing it with an NG tube (through his nose) - clear fluids tonight, breastmilk tomorrow. They're hoping to have him off the ventilator tomorrow or Sunday - and then when he's off the ventilator a few hours, I can try to breastfeed him!
Needless to say, we're very excited. Still nervous, still taking it one step at a time, but clearly, all this makes us happy. Cross your fingers that the closing goes smoothly.
And the swelling in his lips has gone down! I can start to see my little boy lips again!
As for mommy, I swear, I peed out my left leg last night. I stopped drinking nearly as much and I have ankles again!
Little by little. Baby steps all around.
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So we're in a holding pattern now. They woke him up from the paralytic a while ago, and he got a little too excited. (He looked right at us!) They ended up putting him back on, which is fine by me. It breaks my heart to think he might be aware of everything happening to him right now.
The latest update is that they'll close his chest tomorrow, mid-morning. Yay! In the meantime, Jay and I are just resting in his little cubby-room, listening to some EFO, reading the paper - and I figured this might be a good time to write up the birth story before I forget it. :-)
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Hi all.
Sorry for the radio silence yesterday. Sometimes I get so wrapped up in what's going on that I forget about the outside world.
Sammy is doing really well. Exceptionally, actually. It makes me so nervous to say that, but the nurses and doctors are all really, really pleased with the progress he's making. They expect to close his chest today - a day earlier than what's usually done. Otherwise, he's still on the paralytic and still sedated and just going along with what the machines and medicines tell him to do. It's hard for me to see him like this - on a ventilator, tubes everywhere. They're going to slowly wake him up, too - which is good - but the tubes will be in for a while. It kills me to think of that little hand moving up to his face (he LOVES having his hands by his face) and constantly bumping into all the things in the way. He's still puffy, too, though not nearly as bad as they normally see, but it's hard to look at those little lips so swollen and not like before.
So yeah, Mama's having a bit of a tough time. Yesterday, they told us it would be a good day to go home for a few hours and take care of some things, so we did. While we were home, my feet (which have been ridiculously swollen anyway) went into hypermode, swelling to double what they've been - and unevenly at that. This landed us in triage for several hours while they ran bloodwork and did an ultrasound to check for clots. Luckily, everything came back fine, but at that point we had been away from him for hours longer than we had anticipated, and I had a bit of a nervous breakdown.
So Mama's got strict orders to keep her feet up for a while. Mama thinks she needs a stiff cocktail of Zoloft and a sedative while she's at it - at least until he's awake and moving and a little further away from all the wires and tubes. (Mama needs to stop talking about herself in the third person, though calling herself Mama is kinda fun.) Mama thinks postpartum hormones are kicking into overdrive now that the adrenaline's wearing down.
Mama just wants to take him home all better already.
Anyway - I'll try to update this evening after his chest is closed and they start to wake him up a little.
(Edited at 11:50am: They're not closing his chest today - we're not sure of the reason, but it's not for a lack of progress. They stopped the paralytics, so he should be moving around a little bit sometime soon.)
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Mama here.
What a rollercoaster.
Sammy's out of surgery and in recovery. We were able to be with him - they actually encourage it. He's stable, but paralyzed and sedated. His chest is still open - Jay was able to bring himself to look at it, but I can't bear it at all. Luckily, they keep a blanket over him, and I get to peek at his nose and that crazy wild hair and those tiny, tiny toes. I'm going to have to settle for nibbling those toes for the next few days - hopefully by the weekend they'll start weaning him off all the things I don't understand, and hopefully by the weekend we'll get open eyes and that little squeak and the little lip kissing smacks I love so much. It all depends on when they take him off the ventilator.
The surgeon said that Sammy handled everything wonderfully - as best as they could have expected or wanted. And same thing for the steps now - the nurses said he was doing amazingly. Of course, I still feel like we're walking on tiptoes and that at any moment, it could all fall apart - but we're holding on to the little baby steps he's making. That's all we can ask, and really, all we can do.
As for us, I think we're holding up okay. I sometimes forget that I just gave birth a few days ago, and that on top of it all, I'm a painful, swollen ball of hormones. Jay has been incredible - I don't think I would have survived any of this without him. Our families and friends have all been so incredibly supportive, and knowing you're all out there pulling for our little boy - a boy many of you have never met from a mama you've never met - amazes me. It's all such a source of strength and energy for us.
Right now, though, our bodies are a mixture of sheer exhaustion and adrenaline, and it's hard sometimes to figure out which one should win out. Everything hit us tonight - sort of like the adrenaline all exploded and our bodies went into this incredible crash state. I wish I could describe it better, but it's all just such a surreal fog. So we're taking care of ourselves while the nurses and doctors take care of Sammy - we're back at the hotel for some Jeopardy (and one of the answers was just Samson! What a coincidence!), a nap and an attempt at a sense of normalcy. We're going to need all this energy when he starts to wake and we really start to become responsible for doing all those parent things. We can't wait.
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Hi it's Alisa again. Not sure what happened to all of the updates. I checked and their server is not reporting problems but we will figure that out later.
Here is the update on Sammy:
Just got out of surgery
Went as well as expected.
They did have to change their plan once they were in but it went fine.
His chest is open and will remain that way for the next few days.
Erika and Jay are about to go and see him.
Nice to see the magic of all that love being sent their way is working. Thanks guys!
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