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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Yay! A family picture!
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. :-)
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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