Thursday, December 30, 2010

A Birthday and a Homecoming

My best friend, the love of my life, turned 32 today. She's the most amazing wife & mother. My boys & I are so lucky she's ours. :)

Linus's echo on Tues showed a slight amount of improvement. This is not amazing news since they've now quadrupled his Capt0pril dose in the last 9 days. I was sort of hoping there'd be more than "slight differences" on screen. However, since it wasn't worse, they said we could wait to see our regular cardiologist so he can create a new action plan. Upon hearing this news, Trina and I decided that we should bring Linus home. Trina has been living at the hospital and caring for him full time. She was feeding, changing, bathing & medicating him. Why not do that at home? He was no longer wearing EKG leads, just a pulse oximeter and an NG tube. We talked to the cardiologist about it and he said they could teach Trina how to run the feeding pump and how to drop a new NG tube in case he pulled his out. She's a quick study and had everything down pat in no time. They gathered all of the meds and equipment he needed and she brought him home this afternoon.

It's so amazing to have everyone under one roof again. We're still trying to find our stride and get a good pattern down for feeding and caring for all three boys simultaneously. Especially since I'll go back to work tomorrow and Trina will be flying solo against the trio. Having only two of the boys home has been like a vacation as far as the work load. "Twins" are so easy! Two babies? No problem, I have two arms. I can feed, hold, pat, burp or rock two babies with ease. Three babies? Um...two arms...damn. Add in Linus's new "gear" and it can get a little hairy. Never fear, though. Trina is amazing and will have us back on track in no time.

Supermom feeding all three boys before Linus's hospital trip.

Sunday, December 26, 2010

First Christmas & Linus Update

Well, the boys' first Christmas didn't exactly go like I thought it would. I was picturing more joy and merriment and a little less worry and loneliness. My mom and I were at home with The Big Boys. We opened a few gifts sent by family next to a 2ft tabletop tree. Simon and Dexter slept through half of it. I made my regular Christmas fare in much smaller portions, but somehow it didn't taste quite right. Then I burnt the sweet potatoes and nearly cried. It certainly didn't feel like Christmas to me. Trina was at the hospital with WeeMan. She's been staying with him since Friday while I've been off work and able to watch his brothers full time. I hate that, once again, our family is split up.

Going back to work tomorrow is going to kill me. Holding and cuddling and caring for my sons is the only thing keeping me sane and grounded right now. Without them, I'm afraid I'll crumble. After work I'll drive to the hospital to see my wife, hold my little man and pick up breast milk for his brothers.

As for Linus, he's proving to be a troublesome patient. They've more than doubled his meds with no major improvement. His lungs are more clear, but his echo was still bad, he still breathes too rapidly, has retractions and is much too tired to eat a full bottle. He usually gets about half down before needing the rest put down his NG tube. He's blown or clotted 3 IV's now and is currently awaiting the Kangaroo Crew to come put in his 4th. He's scheduled for another echo on Tues. If it's very bad, he'll have his 4th heart catheter procedure on Wed. If they think he can wait a week, his regular surgeon will be back from holiday and will do it then. The hope is after they stretch his aortic valve, again, there will be less pressure in his left ventricle and his mitral valve won't leak as much. If the leakage is still in the "severe" range they'll be forced to do open heart surgery to repair it. This scares me half to death. I know open heart surgery is in his future, we're told it's unavoidable, but I'm just not ready. Will I ever be? I seriously doubt it...

Simon & Dexter opening presents from their cousin, Bailey.
Don't they look excited? :)

Poor Linus spent his Christmas on the cardiac floor of The Children's Hospital. At least he had his mommy with him.

Saturday, December 25, 2010

Tuesday, December 21, 2010

Dammit: Updated

Linus had been doing very well since coming home from the hospital. He's been growing like a weed, starting to smile, pooping like a champ and acting like a "normal baby" in general. Then last week we started noticing the warning signs they told us to watch for when he was discharged. They were subtle and mostly revolved around his feeding. He slowed down on his eating, then began leaving more unfinished bottles than finished ones. As the days went by, his symptoms got worse and I got more worried. I kept thinking, thank god we begged for a cardiology appointment even when we believed we may be making mountains out of mole hills. He started choking more often due to rapid breathing while eating. Then 2 nights ago he looked distinctly grey after throwing a temper tantrum. Last night he started having retractions. All signs pointed to his congestive heart failure worsening. These were the exact signs that had him in his second catheter surgery. I've been trying very hard to tell myself that he'll be fine and that he probably just needs his meds tweaked. Sounds logical since he grew from 5lbs14oz to 8lbs8oz since his last dosing audit.

I took the day off of work to watch Simon and Dexter so Trina could take Linus to his appointment with Dr. HappyDance. I've been anxiously awaiting and equally dreading his findings. I just got the call from Trina a little while ago. Linus's echo looks worse than before and his xray showed that his lungs are wet. They're admitting him for observation while they increase his meds. Hopefully they can get his congestive heart failure back under control without sending him back into surgery...

Update: Just heard from Trina again. Apparently Dr HD said he was "very disappointed" with Linus's echo results. His aortic valve seems a little more narrow than after his last catheter and his mitral valve is leaking like a sieve. HD is going to talk to his team about different courses of action. These include higher medication doses, maybe another balloon catheter to stretch his aortic valve and possibly open heart surgery to repair the mitral valve. For the moment, Linus had an IV put in for general fluid and medication maintenance and an NG tube placed so he doesn't have to work so hard eating. I can't believe my baby isn't home anymore. :(

Friday, December 3, 2010

My Little Men

I love these babies more and more each day.
How could I not when they look at me like this?

Wednesday, December 1, 2010

2 Months

The boys had their 2 month check up today complete with vaccines. They were not impressed. Here are their new stats. These boys are growing like weeds!

Simon: 9lbs 10oz, 21.5" long
Linus: 6lbs 11oz, 20" long
Dexter: 9lbs 15oz, 22" long

Thursday, November 25, 2010

Best Turkey Day EVER!

Having three little babies at home together in time for Thanksgiving is like heaven. :) One of these days I may post about how this was possible. I'm forever 2 weeks behind on here...

How precious is this tookus lineup?
Poor Linus's legs look like twigs next to his beefy brothers.

Wednesday, November 17, 2010

Picture Time!!!

Since I suck at updating lately, I'll reward your loyalty (read:buy your love) with photos of my beautiful boys. I could seriously kiss these babies til my lips chap. :)

Simon, my little snuggler. Look at those cheeks! 100% squeezable. I've counted no less than 3 dimples on this kid.

Linus, my little man. He just reached 5lbs for the 3rd time. Lets hope he keeps it this time. :)

Dexter, the doll. Could this kid be any more handsome? He's traded in some of his glares for sly glances. Thats right boy, you'll get more out of life that way.

Tuesday, November 2, 2010

Linus's Story: Part 3

Tues before last, Trina and I walk into Linus's room. My mom watched the other two boys for us so we could both see Linus together. It's been a while since we weren't split up between boys. Much to our surprise a doctor walked right in behind us. You never see doctors after normal hours so I was a little scared. She goes on to introduce herself and to tell us that she was just about to call us. Dr HappyDance came by to see Linus and was not happy about his condition. He's always breathed a little faster than normal, but that day it seemed worse. They gave him extra Las1x to pull the fluid out of his lungs, but it didn't seem to help. The OT hadn't been able to work with him on his suck swallow reflex because he was breathing so fast. This was not a good sign. We were told he would need a 2nd balloon catheter procedure in the morning and that we needed to be there to talk to the DrHD before hand.

We were shocked. He'd been looking so good. They'd only moved him downstairs 5 days prior. We thought we'd have a few months to get him home and grow him up a bit before his next procedure. Apparently not. We held him and cried until it was time to go home to our other boys. Then we held each other and cried.

Once again my mom watch Simon & Dexter while we went to be with Linus. Dr HD explained that he was unhappy with Linus's progress. His echo showed no improvement in his left ventricle (LV) function and his lungs were taking on more fluid. He went over all of the possible complications that doing another cath may cause. The list was long and almost all of the complications could lead to death. We signed consent and waited for the anesthesiologist to come talk to us about all of the complications Linus could have on his end. Once again, the list was long and filled with death. We signed again with a heavy heart feeling like we had no choice since doing nothing would most certainly lead to death, albeit a slower one.

Our first update call came an hour or so later. They had finally gotten Linus knocked out. He doesn't deal with anesthesia well so it's always a dangerous project for them. At that point he was "mostly stable" with a ventilator and meds so they were going to proceed. The next update we got was that the measurements were taken, they were not going to balloon the valve and the doctor would be right out to talk to us. We were so confused. We were shown to a consultation room and told the doctor would be right in. A while later he showed up. He explained that he went in through both the femoral artery and vein at the same time with two different catheters so he could take real time pressures on either side of the aortic valve. He would have been happy with any gradient under 30 and Linus's was only 12. That told him the reason his left ventricle wasn't working properly was not because it was pushing hard against an obstruction and losing. It just wasn't trying to push. His thinking was that we no longer had a valve problem, we had a heart muscle problem. He recommended Linus be put on blood pressure medications and a diuretic to keep the fluid out of his lungs. Hopefully his left ventricle function would improve, because if it didn't, he'd be on a heart transplant list.

We were in shock. Gone was our ultimate fear of having to reconstruct or replace his aortic valve before he was ten pounds. It had been replaced by the fear of needing a full heart transplant. How could this be happening to us, to our little boy? When we went upstairs to see him he looked terrible. If I didn't have all of the machines to assure me he was alive, I would have wondered.

The next 4 days were a barrage of bad news and complications. He spiked a 102' fever and was started on 3 potent antibiotics. Blood, urine and lung aspirate cultures were taken and luckily came back clean 3 days later. As the fever broke, his blood pressure dropped. They had to stop one of his pressure meds and give him 3 blood transfusions. He had no pulse in his leg for days. An ultrasound showed a huge clot almost fully occluding his femoral artery. Then his right partially lung collapsed. He needed IPV treatments several times a day. Every day there was some new terrible thing he had to overcome. I couldn't understand how he kept going. We spent hours at his bedside. We cried buckets of tears and felt helpless to ease his suffering.

Linus's new room upstairs in the CVICU. So many machines to regulate one tiny boy.

A few hours after his 2nd catheter procedure. Eyes swollen. Completely sedated.

Ventilator tube and CO2 monitor.

Blue NG tube usually used to feed him is now being used to vent his belly so gas doesn't build up.

Teeny blood pressure cuff.

Picc line to deliver meds directly to his heart. Used to have 2 lumens, but one clotted off.

An arterial line to monitor arterial pressure and to draw blood. The blue wire is a temperature monitor that correlates with his heater so he's kept as comfortable as possible.

The red glow at his ring and pinky fingers is a pulse oxymetor that keeps track of his oxygen saturation.

Pressure bandage at his hip so the artery and vein that were catheterized don't bleed.

Blue leg with no pulse due to the large clot in his femoral artery.

IV in his foot giving him one of many blood transfusions.

Monday, November 1, 2010

Linus's Story: Part 2

I don't remember much of what happened when Linus was in surgery. A numbness had taken over. I was happy for it, though, because it beat back the cold chill of terror. We were told that someone from the cath lab would call and give me an update every hour or so. We received one call in almost 4 hours. I wasn't mad, I wanted them focused on him, not us. I finally got a call telling me that the doctor would meet with me in a consultation room to debrief me on the outcome. I'll save you from the "boring details" but basically he said the procedure itself didn't go as planned, but the outcome was good and that was what mattered. They had taken the .5mm hole he had in his aortic valve and stretched it to almost 5mm. He said that 50% of pediatric heart patients need a 2nd procedure before they turn a year old and since Linus required his first one at under 2 days of age, he would definitely be in that 50%. His left ventricle had been pumping against a closed valve and had sustained a decent amount of damage.

Unfortunately after the procedure, his Lactate levels rose to fatal levels and his belly became super distended. He was given two blood transfusions to neutralize the lactic acidosis. They did xrays and u/s on his belly and thankfully found mostly trapped air as opposed to necrotic or twisted guts. They ran a tube into his stomach to relieve the pressure.

Once again, I was shocked by how bad he looked. Add to that the fact that he was paralyzed and heavily sedated. I asked the nurse how long it would take for the meds to wear off. He said it would be a few hours, but that as soon as he twitched, he would hit him with more drugs. He was suffering from reprofusion injury which was quite painful. He said it was like the pins and needles your arm feels when waking up, but it would be his whole body inside and out. I can't think of a more terrible thing for my tiny son to endure.

When Linus would come to he was so sad and in so much pain. He would cry and cry and there would be no sound. His body would rock from the force of his tantrum. He'd be bright red and shaking his fists, but the vent tube made his fits completely silent. It broke my heart. Here he was screaming and no one could hear a thing.

The next week is kind of a blur. I was going back and forth between the two hospitals to spend time with my wife and all 3 sons. I had to make sure both milk banks had breast milk for my boys. I slept a little here and there. I slept in the CVICU waiting room, several rooms at the Ronald McDonald House, Trina's room and the NICU waiting room. I'd wake up and have to look around to try to remember which hospital I was at. I was running on coffee and fear.

It seemed that every day there would be a new complication with Linus and his doctors were in two very different camps regarding what needed to happen next. He was getting daily echocardiograms and they showed VERY slow but steady progress in his left ventricular function. I was warned several times that he was still critical and not to be surprised if he was in open heart surgery by the end of the week.

I had one doctor, lets call him Dr Pessimist say that if they stopped the prostaglandins (PG) and let Linus's PDA close, his left ventricle (LV) would fail under the heavy workload. I also had the cath doctor, who we'll call Dr HappyDance, who said that he thought as soon as the PDA closed and the LV had no more crutch, it would really shine and show us what it had. They stopped the PG and his LV continued to make it's painfully slow progress. He was also able to shed his many medications one at a time over the next few days.

Then came the jaundice. As far as backslides go, this wasn't a bad one. It was just one more thing piled on top of so many other "things". A few days under the lights and he turned right around. When they dropped a feeding tube down his nose and started giving him tiny amounts of breast milk, I almost cried. My poor baby had been on IV nutrition only and finally he was getting the good stuff, even if it was just a bit.

The next bit of bad news was that they saw a "blip" on Linus's echo and thought it was a blood clot in his LV. If this clot broke loose it could cause a major stroke or death. He was started on blood thinners to break it up. The next day I see Dr HappyDance at the bedside and he tells me how great he thinks Linus is doing. Sure, his progress was slow, but it was steady. He's a little guy and he's taking his own time to heal, etc. I said "Yeah, but now with this clot, I'm so worried" He says "There's no clot". Huh? He goes on to say that he doesn't think the blip was a clot, just a blip. Apparently Linus's blip was the topic of a heated "discussion" at bedside earlier and it was decided that they needed to do a TEE to determine what the blip was. The next day he was taken off his breast milk and sedated, again, to preform the more invasive, more accurate test. The blip was a blip. No clot to be found. That's another point for HappyDance.

Preparations were made to extubate Linus. Then Dr Pessimist said there was no way Linus could be extubated because the stress of having to breath on his own and have his LV pump all of his blood unaided would be too much for him to handle. He made it through several support trials where he still had the ventilator tube in, but was breathing on his own for 4 hours at a time. They planned on removing his vent the next day. Unfortunately Linus threw a huge fit and extubated himself in the middle of the night. He was so worked up that he had to be reintubated after only 30 min. Then his next set of bloodwork showed that his hemoglobin was really low meaning that his blood was carrying very little oxygen. Basically his ineffective heart was carrying ineffective blood. No wonder they had to tube him again. The next morning he had his 3rd blood transfusion. I was afraid Dr Pessimist would take this as a sign that he was right and keep him on the vent for even longer. I didn't want this for Linus and he absolutely hated that damn tube. He had to be sedated at least once a day when he got agitated and started pulling on his tube. They even put him in little soft restraints to keep him from tearing at it. Luckily cooler heads prevailed and he was extubated two days later. He was tubed for a total of 16 days. Two days later I was able to hold him for the first time ever. It was pure heaven for me. I cried like a baby.

After a few days, they gave him his first few cc's of breast milk by mouth. His first taste of food came 20 days after he was born. Not long after that he was weaned off his heater and could maintain his own body temperature. Then came the big news. He was healthy enough to moved out of the CVICU and down to the regular "heart patient" floor. We were both excited and nervous. Although we were glad they thought he was well enough to leave, we would miss the comfort of knowing a nurse was staring at him 24/7. On the floor he'd be in his own room with the nurse's station down the hall.

Linus moved downstairs and into his private room equipped with a TV, a PS3 & a full sized shower. He didn't use these things much, but they were nice to have. His personality started coming out a bit now that he wasn't so manipulated, bothered and sedated in vicious cycles. His time with a tube stuck down his throat caused his voice to sound like someone who's abused cheap liquor and cigarettes for far too long. It was raspy, but I loved being able to hear him. I started dreaming of a day when he could come home.

Then the next bombshell hit. They had decided to go back in and balloon his valve again. We were about to have to start all over. To be continued...

My tiny fragile boy.

Those pleading looks shatter me.

Full body restraints.

Tiny soft cuff restraints.

Holding Linus for the first time.

Looking at his mobile in his big boy bed in his big boy room.

So happy to be in his mother's arms and not in the CVICU.

Sunday, October 31, 2010

Babies' First Boo

Taking pictures of two boys is so hard, we are totally screwed when there are three. :) You can see Simon's bald patch behind his ear. One of four that the nurses shaved into his head for IV's. I'm sure they're great at their job, but they suck as beauticians. :)

Simon looks like a baby werewolf to me in this photo. Maybe it's the pointy ear and unruly hair. :) Dexter was being so sweet and cooperative. He finally just fell asleep while we maneuvered Simon.

How precious are these brothers? They were fussy after the photo shoot so I was rocking them. Dexter reached over and grabbed Simon's hand. I know it was coincidence, but it looked so purposeful. He held on for a really long time, too. (Please look away from the disheveled woman with her shirt on inside out. Nothing to see there...)

Not only was Linus's onsie WAY too big, he was not in a position to be messed with. I had big ideas of cutting the back out and splitting the sleeves to do a wrap around kinda thing. Negative. He was calm and on his side. Blanket onsie shot it is.

A bib his Cousin Bailey sent to him. Everytime I laid it gently on his chest he flung it off. Point taken. Set it next to him to snap the photo. :)

Friday, October 29, 2010

Guess Who's One Month Old Today?

See that hair? The cockatoo-do that kid on the right is
sporting? That's what I look like every morning. He is SO
lucky he has me around to give him some pointers.
Mousse, brush, dry, hair glue, pick... Sometimes repeat...

Dexter's Story

Poor Dexter has had his story on the back burner for so long due to his brother's rough time. I hope I can make it up to him. Here goes nothing.

Dexter Vaughn was our last born and our smallest baby boy. He made up for both circumstances by being the loudest and the most demanding. Small or not, you can NOT ignore Dexter. He also began doing nearly everything first. He was the first to wear clothes, the first to breastfeed the first to come home. He's been a rockstar. This is not to say that he hasn't had set backs. He most certainly has. The fact that he started out last, had roadblocks and still powered through to be the first is awesome. This kid is pure gold.

Dexter came out crying and didn't stop. He cried through stabilization, he cried on the walk to the observation room and kept crying until someone put a binky in his mouth. Then he sat around glaring at everyone like "Geez, took you long enough to get that." He actually put his hand up and held onto that binky for dear life. I thought it was a cute coincidence, it wasn't. He's been holding his binky on purpose ever since. He continued to glare and make disgusted faces at nearly everyone for the first several days. All I could think was "Man, this kid is gonna get slapped if he doesn't lose this habit." I know this from experience. :) The first time he glared at Trina she looked at me accusingly. "That's your face! You look at me just like that sometimes and I could just kill you!" See? This kid is gonna have trouble. Luckily for him he's added a few expressions. A lot of them actually. This kid has so many faces. I could just watch him react to the world all day every day.

Dexter has been alert from minute one. His brothers would be sleeping or cooing or doing other "baby type things" and he'd be looking around, quietly assessing things. It was like he was plotting. One of the nurses said it was "creepy" how much he acted like an older kid when in fact he wasn't even supposed to be born yet. I agreed. He looks at you like he knows something. Another thing he did that was so "un-preemie" was that he hated to be swaddled. He spread out all over the place. They'd put him in the middle of his bed in a ball and he'd end up to the one side with his leg kicked over the mattress. It was so cute. He was very preemie like when it came to stimulation, though. He hated being touched or moved or messed with in any way. A diaper change could send him over the edge. The only thing that would calm him down was that damn binky. He'd hold onto it like it was his only life line.

At birth he had trouble breathing and was put on oxygen. He graduated off of it by the next morning and I was thrilled. Then he started retracting while breathing. His chest would nearly collapse with each breath and you could see every detail of his rib cage as the skin and muscle sucked in. It was painful to watch. He was diagnosed with immature lungs and put back on oxygen. I was so worried. My tiniest baby was in trouble I felt so helpless. When I called to check on him a few hours later I found out about Linus. Dexter's weak lungs took second fiddle to Linus's failing heart. Poor guy. Dexter pushed on and was back off oxygen in no time.

After his breathing was under control, they started offering him milk by mouth instead of through his NG tube. He was taking all of his feeds by mouth within days. This kid is such an aggressive eater he was collapsing the nipples. Next his IV's came out then he was moved into an open crib. He passed every test they gave him. I was shocked when they doctors were talking about sending him home at under 2 weeks. He wasn't even back up to his birth weight. He left the hospital at 13 days old and exactly his birth weight of 4lbs10oz. Due to his previous breathing problems, he was sent home on an apnea monitor. I hate that damn thing. It is the bane of my existence.

He has been an absolute joy to have home. He still eats like every meal is his last and he's very attached to his binky. I love snuggling and kissing this boy. I think the 2 weeks of one on one attention may have spoiled him a bit. He could lay on your chest 24/7 and be happy. He's in for a rude awakening when his Grandma goes home and both his brothers are here. Poor kid. We won't tell him what he's in for. :)

Screaming at birth.

Hollering in observation.

The glare.

Getting comfy.
To get an idea of how small he is, look at the bandaid on his thigh. :)

Angelic face.

Sizing me up.

Retracted breathing. This was fairly mild compared to his worst.

Milk drunk smile.

Very concerned.

What's the plan, Mom?

Not impressed.

MY binky. No touchie.

He loves bath time...

Binkies make everything better.

This is just the sensor.
The actual monitor is bigger than my kid.