Post Surgery Update

So much has happened in the last 4 days. It seems like a year ago I was headed down to the hospital to spend some quality time with my boy before they took him into surgery. It was pouring as I drove to The Medical Center. Thanks to high school English, I couldn't help but think about the symbology of rain in literature. Would this rain be looked back on as an omen of sadness and despair or seen as washing away the past for a new beginning, a rebirth? Apparently the combination of dread, sleep deprivation and high doses of caffeine can cause you to wax philosophic.

I got to spend about an hour with Linus before being taken to pre-op. My dad, Trina and I all took turns holding WeeMan as we waited for them to come take him from us. Every few minutes someone new would come by to explain their role in Linus's care and have us sign their department's waivers and releases. I got a good feeling from each of them and it was reassuring to know he would be in their hands. When they finally came to take him, he was calm and even flirted with the woman who carried him off. Seeing him watch us over her shoulder as they walked away completely undid me. Trina and I held each other and sobbed while my dad wrapped his big arms around us both. I kept seeing the image of his sweet little face peeking over her shoulder and couldn't help but wonder if that was they last time I'd see my baby.

A nurse came down and gave us updates every hour and a half. She never had any specifics and that was kind of maddening to someone who finds comfort in the details. The time seemed to fly by or creep along with no real rhyme or reason. We were given a very basic timeline of 6-10 hours so we were shocked when the "update nurse" said she believed the surgery was nearly finished around the 6 hour mark. We learned that our surgeon was able to create a better than "best case scenario" set of procedures! Instead of doing the mitral repair, aortic annulus expansion and Ross procedure, he was able to repair both the aortic and mitral valves. This change of plans, like most things, has pro's and cons. The pros are enormous in that a less invasive procedure has a lower death rate, a faster healing time and the big plus of not having any foreign material added. The con would be that his valves are still far from normal and he'll need more surgery in under 5yrs instead of 7-10yrs. When I asked the surgeon to speculate on when Linus would need another surgery and what it may be, he was very vague. When asked what the chances were that he'd eventually need both valves replaced, his answer was a definite 100%. In the mean time, we just hope that Linus's own revamped parts take him a long long way.

Seeing Linus after surgery was both a shock and a relief. I was SO grateful he made it through surgery without any major complications and he didn't look as bad as I was imagining. At the same time my poor tiny baby was a tangle of probes, stickers, wires and tubes. He was surrounded by machines and was, of course, now sporting the "cardiac warrior badge" on his chest. I was afraid to touch him, he looked so fragile.

These past few days have been rough. It seems like every hurdle we get over leads us to another problem to tackle. It's exhausting riding this emotional roller coaster. Monday was plagued with high left atrial pressures and low venous pressures. He was anemic and received 2 blood transfusions. Then he started get agitated and had to be put under a deeper sedation.

Tues his atrial pressure was mostly under control, but every time he started coming around, his blood pressure would drop drastically. This is exactly the opposite of "normal". Once again they had to keep him deeply sedated. They were using both morphine and versed every few hours. They were also tweaking 2 pressure meds, 2 diuretics and drastically lowering his fluid intake. Nothing seemed to work. To combat his crazy pressures and his anemia at the same time, they used a controversial tactic. A doctor came in and aspirated 100cc's of his blood an replaced it with 30cc's of packed red blood cells. The thought was that while he had too much blood to let his heart beat properly, it was dilute blood causing his anemia. This crazy trick worked...for about 3 hours. Then the pressures were back to being nuts. *sigh*

Wed his wonky blood pressure issues resolved themselves and they were able to remove the pressure probe from his heart. He then popped a fever of 102' so they started him on antibiotics and cultured his blood, sputum & urine. Since he was finally allowed to wake up properly, he started breathing very well on his own. After some volume support trials he was able to be extubated. He was instantly calmer with that tube out. His hourly blood test results came back a little while later. We learned that his sodium levels were alarmingly high. Only 2 points away from the "seizure inducing level" apparently. They started putting a small amount of sugar water through his NG tube and upped his IV fluids just a bit. This kid does is usually on a strict fluid restriction so it's a difficult dance. About an hour later Trina was able to hold him for the first time. It was obvious that moving him was uncomfortable, but he was so at ease in Trina's arms. Later when she put him down he was very upset. Poor little guy is used to lots of snuggles and he's been in bed for the majority of the last 4 days. Last night he blew his arterial line after having it in a solid 3 days. That's not bad for him. Luckily they still have a central line they can use for blood draws and such.

Today brought us slightly lower sodium levels, another blood transfusion, another fever and some vomit. Linus was allowed to drink some clear electrolyte fluid today. His first oral feeding since Sunday night. He took 3oz like a champ. That's more than he's been able to take orally in a long time. Later on they decided to try him on a little breast milk. That didn't work out so well. It all came back up. It's not a big deal, just a small back step. We're SO used to those. I actually get a little nervous when things go "too right." They were able to remove his chest tube, then tonight he blew one of his IV's, has an elevated respiratory rate requiring diuretics and was taken off one of his pressure meds. All in all things are going ok. Never a dull moment with this kid. It's scary then boring then emotional then confusing then scary again then tiring then sweet...and on and on and on.

Laughing at Mama in Pre-Op.

Hanging out with Papa.

Waiting is tiring.

My poor sweet boy after surgery. :(

When he got back from surgery, his binky was in a specimen jar. :)

Starting to come to on Wed. Such sad eyes.

The knot in one of his blood transfusion lines looked like a heart to me. :)

Finally off the vent!

Morphine dries your mouth out something fierce. He was NPO but we were able to moisten his mouth with this little sponge. He'd get so mad when we took it away.

Trina was able to hold him for the first time Wed evening.

A photographic tour of Linus and his gear post-op. May be too graphic if you have a weak stomach or soft heart.

All the equipment keeping him stable.

Right after surgery. He was so sedated his eyes wouldn't stay closed. They were drying out so I had them order him up some goo to keep them moist.

His ventilator tube. He couldn't breathe on his own for most of the first 2 days. The tube in his left nostril went into his stomach.

This little container in the bottom right collected the nasty stuff suctioned out of his stomach.

This chest tube siphoned of extra fluid in his chest cavity so it couldn't cause pressure on his lungs or other organs.

This box kept a slightly negative pressure in his chest tube and collected the fluid so it could be measured.

The little metal spiral under the "X" of tape is a pacer wire imbedded into his heart muscle. The clear tube to the bottom left of it is a probe inserted into his left atrium to read the pressures there.

In the case of a wonky heart rhythm, this external pacemaker would be hooked up to the pacer wire so they could regulate him temporarily until it was normal again.

WeeMan is back in soft restraints. Can't have him flailing about or ripping out any of these tubes or wires. There's a peripheral IV in this wrist.

He has a PIV in his forearm (blue butterfly), an arterial line in his wrist (tubes and syringe) and a pulse oximeter on his hand (glowing red light).

He's got a central line in his left femoral vein that has a catheter leading into his heart. They used this for his blood transfusions, to draw blood and to measure his central venous pressure. The blue tube coming out of his left diaper leg is a foley catheter. It drains his urine.

This box on the end of his bed collects the urine for examination and measuring.

The pad on his right foot takes a constant temperature reading. The band on his left ankle is his ID badge. The white/orange deal in the left bottom corner is a teeny blood pressure cuff.

Triple Post

OK, the next few days/weeks may be a little hairy for me, so I'm going to do a massive, three part post now. This way everything won't shifted get to the back burner forever like the post about Linus's third catheter procedure and subsequent NICU III stay. Oh, you didn't know about that? That's because I suck and that part of the story is still sitting half written with a date of Nov 11 on it. Nice documentation of major events on my part, eh?

Part One-February: Grey

2011 Color Photography Project

Trina took these photos last week and I couldn't be more proud. I think she did an amazing job!

Part Two- Surgery Update:
Wednesday the surgeon's people called and said they doubted they'd be able to get him in by the end of the week, hoped they could get him in early the next week and were sure it would be by the end of the next week. This very clear and specific plan was very comforting... Juggling my work schedule, my mom's help and life in general with this vague news left a little to be desired. Then Thursday they called back and said they had a new plan. Sunday we were to call admissions and ask when they could have a bed ready for him on the cardiac floor. We would then go to the ER at that time and hopefully get taken up to his room immediately without having to mingle in the general population for long. They would do all his pre-op stuff upstairs and he would be taken in for surgery 7AM Monday morning. Apparently the CVICU is still full, but they are worried about his worsening symptoms. Yeah, me too... This morning we called in and they told us to have Linus in the ER at 2PM.

He had another rough night and slept through his 7AM feed and halfway through his 11AM feed. It's a good thing he has that tube or he'd never get any nutrition. This poor boy has very little energy these days. When he's awake, though, killer charisma. Then it was time. I bathed with him, dressed him in a cute little outfit and kissed him several more times than would be considered "normal" even for me. Trina drove off with him and I was left feeling empty and on the verge of panic. Luckily I have two more precious boys to distract me with their beautiful sparkly eyes and drooly fingers.

He was admitted without incident. They did all of his pre-op testing and sent an IV team with an ultrasound to place his line. They even used a bit of lidocaine before digging around to make it less traumatic on him. Much better than the last experience. He's on the schedule for 7AM tomorrow morning. Trina's spending the night in his room and I'll drive out after Simon & Dexter's 3AM feed. That way I'll miss morning traffic and to be able to spend a little more time with him before they take him away. My mom got in this afternoon and will watch the big boys while Trina and I are at the hospital with Linus. My dad drove in this evening and will be at the hospital with us for support. My stomach and my nerves are shot. I can't believe this is really happening this time...

Having his lunch on the playmat.

All clean and ready to go.

Part Three-5 Months...Almost

The boys will be 5 months old on Tues, but obviously, Linus will not be home for it. I went ahead and took this photo a few days early so he'd be in it. This is not at all the photo I was going for. I dressed them in cute little khakis and button down shirts with these white onsies as undershirts. They were adorable. Adorable and pissed. I only got one halfway decent shot between sobs. Dang. I gave up and stripped them down. Then they got happy. Dammit. Ah well, if I can get 2 out of the 3 of them looking remotely happy or in my general direction, we call that a good picture. :)

This month's "big thing" was the introduction of the jumperoo. All three of these boys are major fans. I'm constantly amazed at how well they took to them. They play with all of the toys. They push buttons, roll a barrel and can even put the teether-on-a-string in their mouth. We have 2 different brands and Simon loves one while Dexter prefers the other. Simon is a major jumper who goes both up and down and side to side. He gets crazy in there and laughs his butt off. Dexter likes the more stable option and can turn the seat around to look at all the different toys. He studies them all then moves to the next one. Even Linus likes to play in them. He's not as wild as Simon and not quite as attentive as Dex. We still have to put a pillow under his feet so he can reach as he's a bit shorter than his brothers. The other day Simon and Dexter were in the jumpers facing each other and started talking and laughing at each other. This morning Simon and Linus were on the same playmat and Simon was tickled pink to squeal and talk to Linus who steadily ignored him. It was kinda precious. It was so much fun to see them interact so well. They're only now acknowledging each other with any consistency. I sure hope they grow up to be best buds. :)

Just Keep Smiling

Tues morning I woke up early to feed the babies so their mommy could sleep. She had a very rough night with Linus who has taken to projectile vomiting several times a day and night. Apparently the less oxygenated blood his digestive tract gets, the worse his reflux will become. We've had to take his feedings from 240ml/hr all the way down to 80ml/hr. This means we get a lot less sleep and he has to be hooked up to the pump for much more of his day. So there it was, bright and early on the morning my boy was supposed to have his heart surgery and instead we've battled vomit all night long and are starting the day just like any other. I was in a pretty foul mood to say the least.

I measured out all of their various medications and put the bottles in the warmer. I went over to Linus who was sleeping in the swing as he tends to do on "bad nights." I was planning on just putting his meds through the NG tube, then starting his feed while he slept. I figured he could use the extra sleep like his mom. Well, apparently I was too noisy because he woke up. I expected to have an overly tired, cranky baby on my hands, but I couldn't have been more wrong. He makes eye contact and shoots me the biggest, brightest smile he has and then laughs! I couldn't believe it. Linus can be a hard crowd when it comes to laughing and here he was giggling unsolicited. What a ham. I changed him and we chatted for a bit before the other boys started stirring. He is such a happy, joyful little guy. It really made me think. Here's a kid in heart failure that's been up puking his guts out all night and he can still keep a sunny disposition. I'm pretty sure I could learn a thing or two from him.

These boys are such amazing little creatures. I swear they smile and giggle and chatter twice as much as they're grumpy or sad. Everything seems to make them smile.

Sitting in the glider with Mimi makes Simon & Dexter smile.

Bath time makes Linus smile.

Hanging out on Mama's bed makes Simon smile.

Diaper changes make Linus smile.

Hanging out on Mama's bed makes Dexter smile.

Jumperoos make everyone smile!

They Might Be Giants

No, not these guys, OUR guys. We had a pediatrician appointment on Thurs and our doc was shocked to see how much they'd grown since the last appointment. Frankly, so was I...

Simon:

16lbs6oz,

26" long

75th percentile for height and weight (up from 25th percentile last month)

Linus:

14lbs, 25" long

25th percentile for height

35th percentile for weight (wasn't even ON the chart last month)

Dexter:

16lbs9oz

26.5" long

75th percentile for height and weight (up from 35th percentile last month)

Disappointing Surgery Update:

I've been able to keep a pretty steady dose of denial in place these last few weeks as we waited for Linus's surgery date to draw near. I needed it to function. A few days ago I kept "feeling strange" and having stomach issues. I hoped beyond hope that I wasn't getting sick. I finally realized it was repressed anxiety. The minute Linus's surgery would come to mind, my stomach would drop and have that horrible butterfly feeling. My denial was slipping. Also slipping was Linus's health. He's been on a slow downhill slide, but over the last few days he's been noticeably worse. He barely eats anything by mouth, sleeps most of the day away, the slightest exertion has him drenched in sweat and he's had a few color changing episodes. Last night he turned pale blue around the mouth. Yesterday I worked my last day before starting my 2 weeks off . My mom drove into town to help us care for the boys and ourselves over the next few weeks. This morning Trina and Linus drove to the hospital to have him admitted and have his pre-op testing done for tomorrow's surgery. They got there around 7AM, dealt with paperwork and went to the lab. Drawing blood from Linus is a nightmarish ordeal. Every vein he has has been poked and prodded and ruined over the last few months. Today was no exception. They held him down and dug around in his arm making him scream, turn blue and soak his clothes with sweat. Trina was so upset at how roughly he was handled. When she got back upstairs, they informed her that all of the surgeries for the next few days had been cancelled do to an influx of emergencies and a heart/lung transplant. The CVICU was full so Linus would have no place to go post op. Trina was livid that she hadn't been told this BEFORE she drove the hour and a half to the hospital and BEFORE she put our fragile son through that terrible, now pointless, blood draw. We've been told that we will get a call "in the next few days" to reschedule. In the meantime I'll go back to work and we have no idea if my mom should stay or go home (6hrs away) and come back. This is NOT how I pictured this going. My boy is sick and he needs this surgery sooner rather than later. The anticipation is rough on me, but the wait is killing him.

I'll leave you with sad baby pictures because they most accurately depict my current state of mind...

Screaming Simon

Low Spirited Linus

(notice the single tear rolling down)

Dejected Dexter

The One Where I Post A Lot Of Pictures To Keep You Interested...

Precious little sleepy heads.

(Simon, Linus & Dexter)

My smiley boy is going bald on top.

Linus giving Trina "The Eyebrow." :)

You can see how the bottom of his chest sucks in

every time he breathes. :(

Finally a pic of Dexter smiling. I told you he's not as

stoic as he'll have you believe.

Linus & Simon on the play mat.

Dex is forever sucking on his hand these days!

These are the boys' favorite balls. They're always

trying to fit them in their mouth.

(Simon & Dexter)

Snuggling 2 sleepy heads before bed.

(Linus & Simon)

Simon LOVES bath time!

Dexter is pondering a way to get out.

Maybe if he looks extra cute?

I swear Linus is having fun here.

Couldn't quite catch the happy face on camera...

4 Months Old

Wow, I can't believe my boys are already 4 months old. How is this possible? Where has the time gone? The one "good" thing that came of Linus and Trina staying in the hospital for 8 days this month was that Simon, Dexter & I had 5 solid days together. Being able to have them all to myself 24/7 was an amazing bonding experience. I seriously loved every minute of it. I daydreamed daily about being independently wealthy so that both Trina and I could stay home and raise our boys. Obviously it would have been much better if the 5 of us had been together, but as far as silver linings go, it was a pretty good one. Those three boys are my world. I love my family.

Simon is approximately 16lbs which means he's skyrocketed to the 66th percentile for his age. He's rolled from his front to his back several times and can push up with his arms during tummy time like a champ. He can also pull his knees up underneath him while laying on his stomach. When he figures out how to do both at the same time, crawling won't be too far behind. I'm really hoping that's still a long while off. I'm so not ready for them to be mobile yet. He's taken to licking and sucking on his hands all the time. If you hand him a toy he can almost always get it into his mouth. His favorite toy is a ball that is big, but very light and easy to grasp. He tries to put it in his mouth, but it's nearly half the size of his head and therefore does not fit. This frustrates him to no end, but man oh man is it funny to watch. He's still our most passionate son. He gets ridiculously worked up when he's tired or hungry. Anyone that knows me knows the poor boy comes by this honestly. He acts completely mortified and dejected when we put them down after their 7PM feeding. I swear you'd think we placed him in a cold dank cellar the way he carries on. On the flip side, Simon is still our smiliest child. He smiles easily and often and with his whole face. His eyes sparkle with every grin. This kid laughs so loudly, it's hard to believe he's just a baby. When he's lit up like that, you completely forget how crazy he can get. If he stays half as charming as he is right now, we're in big trouble.

Linus is tipping the scales at around 13lbs which means he is officially on the growth chart for his age. This boy is already at the 12th percentile and I couldn't be more proud. I am constantly amazed at how much his and Simon's mannerisms are alike. His cry, although a little raspy and much quieter due to his damaged vocal cords, has the same rhythm and meter as his big brother's. This week he laughed for the first time and again, it sounded eerily familiar. Since he is a few weeks behind developmentally, it's been a hoot to watch Simon grow out of certain sounds and behaviors only to see them "resurface" in Linus. I can totally see why identical twins that are separated at birth end up living such similar lives. On the other hand, Linus is definitely more even keeled than his brother. His highs are a little less high and his lows a little less low. He's now smiling and interacting more with us than with inanimate objects. Take that food bag, who's the champ now?? Although his head control is getting much better, tummy time still consists of him laying on his belly with his face on the mat. I'm sure his strength and stamina will greatly improve after his surgery, which is scheduled for Feb 22, by the way. At this point it takes all he's got just to eat an ounce of food by mouth. By the time he's done the hair at his temples and neck are moist with sweat. As much as I love his newly acquired laughter, I also love his pout. He's mastered the skill of a sad slow cry. He'll wrinkle his brow, then the lip comes out and the eyes water, then comes the whimper. Heartbreaking, I tell you. If we're not careful, he'll get away with murder using that face.

Dexter is also around 16lbs and in the 66th percentile. He still studies things intently and can entertain himself for much longer than the other two. His Aunt Andrea gave him a toy puppy that he absolutely loves. He'll just hold it or snuggle it up to his cheek or chew on it. I just love watching him with that thing. He still hates bath time even though we've still never tried to drown him. One day he'll like it, right? Several times when Trina or I have gone in to check on Simon while he throws his "screaming bloody murder" fits at bedtime, we'll look over and Dexter will be wide awake, quietly listening to Simon holler. When we make eye contact he flashes us a killer smile. It's SO hard not to snatch him out of bed and play with him since he's being so well behaved and precious. I can't believe our little firecracker has mellowed into this soft spoken dream of a child. When he "talks" to you or just to try out his voice, he's so quiet and calm about it. He has the cutest little smile that's just a bit crooked and accented by a deep dimple. You'll have to take my word for it since anytime he's being extra cute and I pick up the camera, he goes blank. Just look back at any picture of him, he always looks vacant or pissed. It's like the damn thing steals his soul. One of these days I'll capture that lopsided smile and show it to the world.