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Sammy's Recovery from the Fontan
posted by Mom on June 10, 2008 in the following categories: Coping , Fontan , Life with Sammy , Surgery & Recovery

I thought it would be important to update with how Sammy has recovered (physically AND emotionally) from the surgery and hospital stay. This was a huge concern and fear for me pre-op - now that he's 2, very aware and very verbal - how would he be affected by what had just happened? I thought it might be helpful to pre-Fontan folks to read about our experience.

Tomorrow is three weeks post-op and 99.999% of the time, you'd never know what he'd been through! Saturday we attended Jack's first birthday party, and there was Sammy, running around with the 4 year olds, soaking them with water guns and laughing his head off. It just floored all of us - how is it possible that he JUST had major open-heart surgery, and here he was, acting like any other energetic, happy, wild little man?

That's not to say there haven't been small signs of the emotional rollercoaster of the hospital stay. The first week or so, he'd wake in the middle of the night saying things like, "NO! I don't want to!" We assumed it was leftover from the night nurses taking vitals, giving meds, etc. He hasn't done it since, and has fallen back into sleeping through the night. He will sometimes ask us to lay down next to him, but otherwise he's falling asleep on his own. This was a huge concern for me - I was afraid he'd be afraid to be alone. Nope. Yay!

He's not a fan of being shirtless. If you pull up his shirt, he yanks it back down and tells us not to do that. Again, I'm pretty sure it has to do with constant attention to his chest by a rotating slew of strange doctors and nurses. He has gotten back to enjoying his baths, though. Woo hoo!

He has started something we're not sure is simply a two-year-old thing that coincides with coming home from the hospital, but he'll say things like, "No, mama, I don't like that game" or "No, daddy, don't say that." I pouted once and he had a meltdown - "No mama, don't do that! Don't make that face!" I'm sure it also has to do with control and feeling the need to control something, anything since he had so little control in the hospital.

Physically, we still can't lift him under the arms. The scab is just about all gone from his incision, and has left behind a thin, white scar. He did develop a surface infection at the incision site, but it's cleared up with antibiotics. They cut the sutures from his chest tube sites last week. We have a check up with his cardiologist in three months; otherwise, they anticipate closing the fenestration by cath in a year or two, unless his sats don't improve on their own (he's hanging around 80). In that case, they'll close it sooner.

His appetite came back with a vengence about 2 1/2 weeks post-op. He's back to eating just as he was before the Fontan - here's hoping he gains some weight! He didn't lose much in the hospital - about .1kg - but he's always been on the very skinny side, and the weight he did lose seems to have come right from his arms and legs. They're soooo skinny!

All in all, aside from the occasional random things he remembers about the hospital (for example, "They have lollipops, just like in the hospital!"), he's back to the little boy pre-surgery. He doesn't seem any worse for the wear, except for the little blips of need for control.

Now if only this oppressive heat wave would lift so I can get him outside and back to enjoying summer!

Comments (11)

Pre-Fontan cath DONE.
posted by Mom on February 7, 2008 in the following categories: Coping , Doctor Visits , Surgery & Recovery , Test Results , Worrying

The doctor just came in to let us know he was all done. He's fine and we should be able to see him in about 45 minutes.

Of course, as soon as the door opened and I saw a white coat, I went into cautious panic mode. Here's how the beginning of the conversation went:

Hi, I'm Dr. So and so, I did the procedure on your son, I'm sorry -

And I panicked for a few seconds until she finished up with - I wasn't there to meet you beforehand.

HELLO! You NEVER start a conversation like this with "I'm sorry..."!!!!!!!!!!!!

Sammy's cardiologist came in to talk to us, told us Sammy's a great candidate for the Fontan - his pressures are great, his ballooned aorta is one of the best developed ballooned aortas they've seen, everything looks fantastic. They did have to coil off one collateral artery off the aorta, so it's iffy as to whether or not we get to go home today. They're currently applying pressure to the entrypoints, and once he's all settled, we get to go be there when he wakes.

Phew. Step 4 out of 5 in this journey done - Norwood, pre-Glenn cath, Glenn, pre-Fontan cath. Now, one more step ahead of us and hopefully the last one for a very, very long time.

Comments (3)

Cath Day
posted by Mom on February 7, 2008 in the following categories: Coping , Doctor Visits , Surgery & Recovery , Worrying

Sammy's back for the cath right now. It took a LOT of sedation to make him mellow out, and even then, they told us it took a long time after he was back there to knock him out. It breaks my heart to think that he was awake - even if he won't remember it - but that he was awake and we weren't there with him. I promised him we would be there. I'm having a hard time with that.

Update from the nurse - which was so much later than we expected (and only because I was starting to panic and made Jay go ask) because they were having such a hard time getting him to fall asleep: they have a cath in each leg and in one shoulder. They're currently taking pressures and pictures right now, and then they'll look for collateral veins they might need to coil off.

We expect another hour or two before they're done. We'll update when we can.

Comments (1)

Pre-Fontan cath
posted by Mom on February 5, 2008 in the following categories: Coping , Doctor Visits , Surgery & Recovery , Worrying

We'll be headed into Boston shortly for Sammy's heart cath. Plan looks like this:

  1. Hotel tonight, pre-cath workup (xray, bloodwork, EKG, who knows what else) tomorrow at 8:30am.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

Comments (4)

Update & Surgery
posted by Mom on July 14, 2006 in the following categories: Coping , General Updates , Surgery & Recovery , Surprises , Worrying

I know I haven't updated in a while. It's been an eventful few weeks, unfortunately.

First was the trip to the ER for the bloody stools. Turns out, Sammy is both milk AND soy protein intolerant. I had spent three weeks dairy-free, but he wasn't getting better. The GI determined he must also be soy intolerant, and since EVERYTHING has milk or soy in it, I had to give up giving him breastmilk. We switched him to Alimentum. I'm disappointed, but he's MUCH better now, and that's what's important, right?

Three days after that ER visit, we ended up back at Children's. It was perhaps the worst afternoon of my life. Without reliving too many details, Sammy's sats (oxygen saturations) dropped and I couldn't wake him up. He opened his eyes just as the 911 operator was going to walk me through CPR. They took us to the local hospital by ambulance, but they were having a hard time keeping his sats above 60 without oxygen, so we took another ambulance ride - through awful rush hour traffic in Boston - down to Children's. We had a three-day stay, where they blamed it all on an upper respiratory bug and dehydration.

And this Wednesday, July 19th, he goes in for his second operation, the Glenn. This is by far harder than the first time around. He's a major part of our lives now. He laughs and rolls over and giggles and has his own little personality. I should be writing about all the amazing things he does, how you wouldn't know he had a heart condition by the way he looks (he's almost 14 pounds!) or the way he acts (right on target for his age, not delayed at all!), but right now, we're consumed by the idea of having to hand him over to the surgeons again and all the fears and worries that go along with that.

So please - keep him in your thoughts and prayers over the next week. We thank you for your love and support in advance.

Comments (5)

Fighting the bad thoughts
posted by Mom on January 12, 2006 in the following categories: Coping

Several times a day, it'll hit me: 10, 15 years ago, Sammy would have had little to no chance at life.

Before the three surgeries (Norwood, Glenn, Fontan) were created and used with some sort of regularity, HLHS babies invariably died within days of birth. So, just 15 years ago, this little bugger kicking and rolling around would have had just a few days with us. A few days. It's a hard thing to stomach.

Now, they give him an 85% of pulling through. The survival rate of the second two surgeries is 99%. Though, there's little to hang on to beyond that right now - the majority of oldest HLHS Norwood children all seem to be in the 8-10 year range. We don't really know how these altered hearts will hold out in the long run.

That's scary.

It's a sobering thought - it really is. I'm trying to see it all from the perspective that things are 85 times better for him now than they would have been in 1995. He's 85 times more likely to survive. I'm trying to remind myself to hang on to that and not let that 15% overshadow it all.

I'm trying - but it's hard not to be scared sometimes. Sometimes, when I'm doing okay, I wonder if I'm just in denial. I know none of us knows what the future holds, but this is just really tough to swallow some days.

Comments (3)

Starting to Get Ready
posted by Mom on December 17, 2005 in the following categories: Coping

I'm doing better today. Yesterday, Jay made me hot cocoa with whipped cream, tucked me on the couch for a rest... then forced me to get dressed and get out of the house. :-) What would I do without him? Strangely, I wanted to go to Babies 'R Us - though I had a tough time with it for the majority of the time we were there. I can't figure out why, but there's just always this urge to cry hanging right in my throat. Still, as silly as it is, as much as we need so many other things, I wanted to find something to bring him home in. Even if we're the only ones who will see him in it, it's still something that's important to me. I think part of me felt like doing this one thing might help quell the panic and guilt that I'm not doing anything to prepare for him. And it did help - a little bit. And I think it let me acknowledge the part of me that believes we'll be bringing him home, something I don't (can't seem to) do often enough.

And there I go, starting to cry again. Blech!

We didn't find a coming home outfit, but we DID find these adorable "little monkey" outfits - complete with little overalls. And we all know how much his mommy loves her overalls! We also decided what to do with the nursery - we bought these to hang on one wall. Nice and simple. We'll likely do three walls in one color and one accent wall, and then solid bedding, since $200 for sheets he's going to poop and spit up on is just insane. Mommy and Daddy don't even have a $200 bed set!

Let's hope this is a continuing trend towards a little bit more hopeful horizon in Ekaland. I'm not pushing it, but it'd be nice to look forward to making it past the first surgery and coming home with a little sprout of our own.

Comments (2)

22 weeks and Life Now
posted by Mom on October 23, 2005 in the following categories: Coping

22 weeks today.

It's been almost two weeks since we learned of Sammy's HLHS. I'm still amazed at how quickly a diagnosis throws you into a completely different world.

A month ago, the American Heart Association was a great organization that had walks every so often. Now, it's a name we see everywhere; it's become an organization we seek out. What did we know of heart defects? Now - it's something we live with, a vocabulary no longer foreign to our daily conversations.

One thing I'm learning so far in this journey - an awful lot of pregnancies are not perfect. There's a lot of confusion and poor diagnoses and bad doctors and good doctors and strong parents and strong, supportive communities. Before we learned of little monkey's heart problems, I was under the delusion that the toughest part of having a child was the sleepless nights. Now I'm learning that for a large number of people, it's a strange, almost surreal entry into a completely different world, one filled with hope and uncertainty and hospitals and terror and love and family and strength and fear and exhaustion and new friends and this incredible bouncing between optimism and sobbing and back again.

I wish I could describe it better. It is surreal. The tough part is the waiting - the waiting between now and the next EKG in November, when I'm hoping for a positive change but terrified that we'll learn something worse; the waiting between now and his birth, which is filled with so much uncertainty; the waiting between his birth and his surgeries and the waiting during his surgeries and for a control freak, the waiting and the uncertainty is too much to handle sometimes.

We found ourselves in the "Children with Special Needs" section of Barnes & Noble today. Special needs? Us? Sometimes it still boggles my mind that we may become those parents who stay at the Ronald McDonald House, who fall asleep exhausted next to their child in the hospital, who lose all sense of time as the days blur together.

I think we're both a little irritated with the lack of published material about HLHS (yeah, yeah, yeah, I know we ended up with the rarest of the rare, but there was so little even on congenital heart defects (CHD), the largest group of birth defects), though we did pick up You Will Dream New Dreams, a collection of stories by parents of children with disabilities. I've been in touch with two women - one who is a month ahead of me in her pregnancy with an HLHS diagnosis and another who has already been there, done that and has an amazing little girl. These contacts give me comfort, especially in that they remind that all of these emotions are normal and okay.

On a positive note, we bought Green Eggs and Ham for the little monkey, our little Sam-I-am. It feels funny reading to him, because a lot of the "talking" I do with him is internal - this belief that he can hear my thoughts because he's still a part of me. Still, I'm looking forward to hunkering down with his daddy and reading it to him at bedtime. Soon enough he'll be here, and we'll be reading it to a yawny little monkey who will be kicking to stretch out in a bed and not against the sides of my belly.

In the meantime, this will have to do - a little control, a little hope, a little sense of normalcy for now.

Comments (0)

Redefining Normal
posted by Mom on October 18, 2005 in the following categories: Coping

How nice is it to go through a day of school without a cloud hanging over my head? Pretty damn nice. I actually feel somewhat human again.

It's funny - Jay and I were talking about this last night, and my mom and I again this morning. We never thought we'd be happy to say, "At least it's just his heart." And my mom pointed out (in the theory that everything happens for a reason) - maybe the Downs scare happened so that when it turned out to just be his heart, we would be relieved and able to face things a little bit better.

Because I do feel hopeful. Don't get me wrong - I have this little piece of me that's waiting for the other shoe to drop, and I definitely do mourn the things we won't have. I'm not looking forward to having him taken from us moments after birth, and I'm not looking forward to seeing him with wires and tubes. I'm not looking forward to not being able to breastfeed, and I'm not looking forward to the fear and anxiety filled nights when he's in surgery & recovery. I'm not looking forward to a lot of it - but we can, and will, make it through. Because now we know what we're up against, and we can plan for it.

And because in the end, we'll have a beautiful, amazing little boy.

Ok, enough of the baby talk. How 'bout that Astros/Cardinals game last night? Whoooo wheee!

Comments (0)

The Baby's Name
posted by Mom on October 14, 2005 in the following categories: Coping

We had been talking a lot about Samuel Atticus. We both love the name Sam, and Atticus is just embodies so many wonderful traits we would want for our little man.

But we changed our minds.

Our friend Erica guessed it right: Samson Daniel.

Samson: After the news, we decided that we wanted something that really exhibited "strength." For months, Jay had been tossing Samson at me, and I kept saying no. Then, in a search for "boy names strength" - Samson came up and I brought it up to Jay. He laughed and reminded me that he had been saying it for months. Then, the next morning, Jay went to go do his assignment for his Old Testament class, and wouldn't you know it? He was to read the passages about Samson. Sign, anyone? Samson also means, "of the sun." This pops up in the inspiration for his middle name...

Daniel: When I was first pregnant and terrified, whenever I got into the car, Loggins and Messina's "Danny's Song" would play. I never knew more than the "Even though we ain't got money... I'm so in love with you honey..." part, and after hearing it a few times, I finally looked up the lyrics -

It's all about being newly married, pregnant with a first child, a little boy. It fit us perfectly! There's a line about "Pisces, Virgo rising is a very good sign, Strong and kind, and the little boy is mine." Barring an insanely early birth, he'll be a Pisces like Jay. I don't know about the Virgo rising part, but I'll take the "very good sign" and "strong and kind" parts!

As for the Samson/sun thing: "He will be like she and me, as free as a dove
Conceived in love, sun is gonna shine above."

Together:
Both Samson and Daniel are from the Old Testament, and both survived being thrown to the lions - one through strength and one through divine intervention. Daniel was protected all night by an angel when he was thrown in. Samson took down the lions by brute force and then went back to gather the honey that bees made in the lion's skull.

Interestingly enough - I wanted the name Melissa for a girl. Melissa means "bee" or "honey." The Melissas are from one of my favorite books, The Fifth Sacred Thing. They were a group of healers, as honey harnesses healing powers.

It just makes sense - great protection and strength against lions. Keeping our little boy safe and strong against everything he's going to face. Honey to help heal him. It's all in there.

So Samson Daniel it is - Sam or Sammy for short. I'm still calling him my little monkey, though. That's what feels right for now.

Comments (1)

Pre-amnio, Baby痴 name riddle
posted by Mom on October 14, 2005 in the following categories: Coping

Random, scattered thoughts:

Up early, but I'm okay. I really am. To help receive yesterday's energy and love, the women in the Reiki group told me to take some moments and "open myself" to it all. I tried, but it was a crazy, crazy day. So last night, when I got to bed, I did just that. I've had reiki attunements in the past, so I had a sense of what to expect. This was a little different - it was like waves coming in from all sides. They weren't all-encompassing or drowning, but like someone walking up to me from behind and wrapping me in a huge, fuzzy blanket. Even now, if I slow down a little, I can still feel it. So know that your love and thoughts and positive energies have made it all the way to the little monkey in Massachusetts!

I'm feeling better about the amnio, too. I'm certainly not looking forward to it, but I'm not feeling the same anxiety I was feeling last night.

Someone pointed me in the direction of a dream interpretation for my dolphin dream the other night. This is what I found:

It all just makes too much sense - healing energy? Personal, spiritual guide? Attuned to the subtle messages emanating from the Universe? I don't know if you believe in spirit guides, but I always have. I'd love to know who this dolphin is!

That said, I think we finally have a name. I'm not going to say what it is until the family's all told, but I'll give a couple of hints. There's a story behind it all, and it couldn't be any more perfect - we listened to the messages from the universe, and the universe gave us his name. His first name means "strength" - as he was one of the strongest men ever. It's also not that common of a name, which is what we wanted. His middle name also means "strength," and it comes from a song I've been hearing his whole pregnancy. (Hey - we've got to arm this kid with all the strength and power we can!) And considering how unreligious we are, these are two awfully Biblical names. :-)

Ok, I should try to get a little more sleep before the house wakes up. Happy Friday, everyone!

Comments (0)

Friends and Tarzan
posted by Mom on October 12, 2005 in the following categories: Coping , Support

I made it into work this morning. There was a bit of a scare with cramping and spotting after I woke up. I hadn't felt little monkey moving around, either, so I was in a bit of a panic. But the achiness has gone away and he's kicking a bit, so I'm just watching things very closely.

My friend Matt showed up yesterday with a huge hug and a gift - tickets to the movies and quite a bit towards dinner at a restaurant of our choice. I still get a bit choked up when I think about it. He made us promise to take some time for ourselves. After, I met up with Erin for dinner, pregnant-lady chat and general silly gossip. It was wonderful to see her, and even more wonderful to relax and have a good time. In-between, there were emails and phone calls of support and love (and promises to come up here at the drop of a hat, we just needed to say the word).

We truly have some of the most amazing friends.

So I'm here and I've given myself permission to take it one class at a time. I felt a bit more positive this morning, so here's to making it through the day. And when I need it, I can come back and read this tidbit from a Reiki list (they're all getting together tomorrow to send healing energy to me and monkey) - it makes me giggle:

Sending all the Reiki Angels we can muster to the "Little Monkey" who will have a "Reiki Angel's Heart!" If he's kicking like a little monkey then you can bet he will hit the ground running & swinging when he arrives! Maybe even beating his chest & yodeling like Tarzan!

It's just such a silly image in my head, I can't help but smile. Our little Tarzan. How cute.

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Trying to get through the day
posted by Mom on October 11, 2005 in the following categories: Coping

Please forgive me if this seems scattered. My brain's not functioning correctly right now.

I wish I had the words to even begin to express how grateful and touched and supported and loved we feel. Your emails and comments constantly remind that we're not alone in this. We're blessed with amazing family and friends, and I'm amazed at how incredible each of you, who took time to email or write or comment or think of us, are as well. Thank you doesn't seem to be enough. Please forgive me, though, if I don't get back to you for a while.

I did something today I very rarely do - I left work. My colleagues were very supportive and shifted schedules to make sure my classes were covered. I made it through first period, and while I was there, I wasn't there. I need an afternoon to take care of myself. I'm going to rest on the couch and drink tea and talk to the bebe and promise to take care of him the best that I can, whatever that means. My stomach has been teetering on vomiting for days, but I know he needs something more than pumpkin cookies for lunch. So that's what I'm going to focus on - taking care of us. And when his daddy gets home, we'll take care of each other. Tomorrow, my parents will be here to take care of us. Thursday, his mom. Friday - I drug myself up and we go in for the amnio.

Yesterday, his kicks were emotionally painful for me, a constant physical reminder of everything going on. As the cardiologist explained everything, it was kick, kick, kick. Last night, we were both struggling with falling asleep, and bebe started up his soccer game. I grabbed Jay's hand and placed it on my belly; within moments, he exclaimed, "Was that him?!" For the first time, he felt the bebe kick. Talk about an onslaught of emotions. With some of the paths we have before us, I'm grateful he finally got to feel him.

My head is spinning with what our lives are going to be like when he gets here and we're faced with surgeries and a child who won't be able to tolerate crowds - or daycare - for a long, long time. I was worried about how a baby would change our lives - with this, I feel like someone picked up everything we had ever hoped or planned, turned it upside-down and dumped it on us in complete disarray. I know I need to start small, focus on today, then tomorrow, and the day after - but still, the large fears loom.

Right now - nap. Maybe something other than a pumpkin cookie for lunch. Perhaps some girl time with Erin. Not reading sites on HLHS, and definitely not spending time thinking about the asshat who cut in front of me to take my parking spot this morning (and almost ending up in a fight because of it). But the important thing - I need to do whatever my body and baby need right now. I've never been good at letting people take care of me; right now, it doesn't sound like such a bad idea.

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Trying to stay positive
posted by Mom on October 8, 2005 in the following categories: Coping

We had a nice long talk this morning about things I never imagined we'd ever need to worry about, and we're at a bit of a standstill until the cardiologist appointment on Monday. So I'm going to spend the next few days fawning over his precious little profile and all his little kicks and not worrying about the what ifs - which is a total lie, because they're always in my head and they're always making my tummy roll around in bad ways, but I can't live like that until Monday. I don't think I have enough energy to cry all weekend over things we have no control over. I need to remember that there's nothing I did, it's not some karmic kick-in-the-ass for freaking out early on (as my heart repeatedly tells me), that his potential heart problems aren't a literal translation of a broken heart because his mommy spent those early weeks certain that she wasn't ready for this baby, and even if it is down syndrome, I was eating plenty of folic acid (at least that's what Jay says) and I took my first prenatal vitamin a whopping two hours after I saw those two lines. Still, I'm pretty damned good at beating myself up, and I need to remember that doing so does no good for any of us.

Positive energy leads to positive things, even if it does feel a little like that hasn't been the case lately.

Besides - look. He's precious. Look at those lips. I could totally gobble them up, and one day I will. Our precious little monkey. How could you not love him?

Comments (0)

 
If you've recently received an HLHS diagnosis
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Thank you! We've been amazed at the influx of wishes and prayers and positive energy sent our way, and we can't begin to express how much that strength and support means to us. Please take a moment and sign the guestbook.

If you're looking for info on HLHS
Please check out the resources. We were overwhelmed with what's availabe on the Internet; hopefully this will narrow it down a little for you. Be sure to read up on all the babies who are doing well - there IS hope!

Hope for children with Hypoplastic Left Heart Syndrome
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This Hope for HLHS site belongs to Erika, Jason & Samson

eComparison - balance transfer