A Story Of Two Moms

Donation A Day

2012-01-19T23:17:00.000-06:00

Thanks to several amazing, selfless people, we blew our first goal of $500 out of the water. Then I got cocky and bumped it up to $1000 and the donations just kept coming. So, in a moment of madness, I raised our goal to $3000. That's $1000 for each of my precious little boys. 39 people have already donated a total of $955. I am in awe of their generosity, but I am not surprised. People from all walks of life have shown us limitless love and support over the past 15 months. I am so grateful that they are now helping us raise funds to help other families like ours, families who may not have the readily available support system that we do. I would absolutely love to reach our monetary goal, but more importantly, I want to raise at least $1 on each of the remaining 30 days before our walk.

Want to donate, but you're low on funds? No problem. Pick one day before Feb 18, any day, and turn over $1 of your hard earned cash. Wish you could donate, but can't spare a single bill? No problem. Share our Team Linus fundraising link on your FaceBook wall. If you blog, embed a badge on your page. Tweet about us. Pass the word along to your friends in an email or over coffee. There are so many free ways you can help. As always, I am forever grateful for each and every one of you.

KTB Walk 2012 from It's My Heart on Vimeo.

Keep The Beat

2012-01-16T01:15:00.000-06:00

I am excited to announce that our family will be participating in Keep The Beat, the 6th annual CHD Awareness 5K Walk on Feb 18. With your help, I know we can meet and exceed our meager fundraising goal of $500. Please visit our Team Linus fundraising page if you'd like to make a donation or if you'd like to join our team and walk with us. All proceeds benefit It’s My Heart, an organization dedicated to supporting families living with congenital heart defects as well as pushing for more research to specifically help children with CHD.

As many of you know, despite his radiating smile and sunny disposition, Linus has struggled his entire short life with congenital heart and GI defects. He was diagnosed with Critical Aortic Stenosis and 3 VSD's when he was not quite 48 hours old. A few short hours later he was transferred to Texas Children's Hospital and taken in to emergency surgery. Over the next several months he gained more and more diagnoses such as left ventricular dysfunction (downgraded to diastolic dysfunction), mitral stenosis, mitral insufficiency, enlarged left atrium, congestive heart failure, failure to thrive, pyloric stenosis, low GI motility, chronic anemia and more. He has spent over 5 months in the CVICU and on the cardiac floor during 5 separate admissions. He has had 4 cardiac catheters (3 ballon, one diagnostic), 2 open heart surgeries (1 aortic valve repair, 2 mitral valve repairs), 22 blood transfusions, a g-tube placement, an endoscopy and a pyloric dilation. Linus takes 13 medication doses, 1 vitamin dose and 1 probiotic dose every day. Since he can only handle 1-2oz of 27cal formula every 15-30 minutes and vomits up nearly every single tiny bit of food he eats orally, he has been primarily tube fed for all but 2 of his 15 months. He gets a tube feed during his nap and is also on a continuous tube feed overnight. Each month Linus has 3 physical therapy appoints, 3 speech therapy appointments, 2 dietician appointments and usually 1-3 pediatrician visits. He also has GI and cardiology appointments every 1-2 months where he gets an EKG, echo, blood work, x-ray and exam. He is weak and uncoordinated. He vomits 1-10 times every day and night. He is plagued with reflux pain. His heart is so enlarged he can't comfortably lay on his back or even be reclined without grunting. Needless to say, his life is not an easy one. If you looked at him, you'd never know it. Linus is vibrant and full of life. He is one of the most charming and happy little guys I know. I'm not sure how he manages it, but I envy him. Seeing that killer smile, listening to him giggle, watching him learn new signs to make up for his delayed speech, witnessing the pride he has in himself for finally being able to crawl, it's easy, even for me, to forget how hard he has it and what a long, rough road he has traveled to get here.

Below is a set of photos that document all that Linus has endured. It's nothing you'd want for your child, for any child. It's not what we focus on or even think about during our day to day. It's hard to look at, but this is Linus's past.

A Day at the Children's Museum

2012-01-12T23:45:00.000-06:00

Today we took the boys to the Children's Museum with our good friend Emily. This was our 3rd trip to the museum, but our first trip with help. Having 3 adults made the whole ordeal SO much easier and more enjoyable for everyone involved. As always, Family Fun Day was a blast.

First stop was the cafe for a quick brown bag lunch buffet of wholesome finger foods.

This time Linus decided to lick the salt off of whole wheat crackers instead of just chewing on his socks. Progress, my friends.

The we went upstairs to run around the Tot Spot.

Dexter loved this fire truck by Green Toys. There were several really cute toys made from recycled plastic. I think I'm going to have to buy some for the house.

The toys that fill this column were so enticing that Linus pulled up all by himself. I can't believe how strong he is getting!

Simon took a moment to read this book before jumping up to run off.

These stairs were no problem for Linus after practicing at Stacey's house.

Simon is in the background driving trucks down the track.

Everybody loves the ball pits!

Dexter walked back and forth over this bridge with several different toys while Linus worked on his standing skills.

Simon was fascinated with the balls and bubbles moving around in this lighted tube.

First Trip To The Zoo

2012-01-05T21:11:00.001-06:00

Today we finally took the boys to the zoo. A friend's mother gave us 4 passes ages ago, but one thing or another always came up. The boys had so much fun and were completely worn out by the end. We spent the day looking at animals while the rest of the zoo looked at us. We'd say "Oooh, look elephants!" and we'd hear "Oooh, look triplets!" One little girl corrected her mother by saying they COULDN'T be triplets because they weren't dressed the same. We heard "You sure have your hands full." from dozens of adults and "It's a train wagon!!!" from dozens of children. All in all we had a great time. I can't wait to go back.

Simon looked like he was waiting for someone to yell at the Rhino for breaking the wall.

Watching the Giant Eland graze.

Checking out "Liberty" the bald eagle.

This otter swam by the boys over and over. It was so cute.

There was so much to see in the African Forest exhibit.

Dex got up close and personal with a Chimpanzee.

Notice the family staring at us in the background? Welcome to our life. :)

We could get them all to look, but not to smile.

Two smiles and one look of complete & total boredom.

Each of these buttons made different forest animal sounds. It was endlessly entertaining.

Simon made out with this buffalo for a while. What? Giant grassland creatures need love, too.

The boys really liked all of the realistic animal statues.

I love the look on Dexter's face. He's thinking "Yeah, go ahead & put your hand near his face & see if you don't pull back a bloody nub."

Mama and baby Rhinos.

For snack time we laid out a buffet of peanut butter balls, orange segments, cheese cubes, crackers, fruit melts, avocado banana balls, water & milk.

The big boys chowed down on all the yummies.

Linus decided to eat his dirty sweat sock instead...

Yes, yes they do. :)

2011 in Photos

2011-12-31T21:49:00.000-06:00

January

February

March

April

May

June

July

August

September

October

November

December

Frugal Family Fun Day

2011-12-29T21:06:00.000-06:00

Today was awesome. The 5 of us jumped into the van and drove to our absolute favorite restaurant for an amazing meal. The waitstaff there is great and they love the boys. A friend of mine gave us a gift card for Christmas that covered all but $3.04 of our meal. After that we hit a Starbucks drive through for a perfectly made Caramel Macchiato, also paid for with a Christmas gift card, this one from my boss. Finally we all headed to the park to burn off some energy & get some fresh air. I can't think of a nicer way to spend my day off.

Linus loves to lick lemons. Say that 5 times fast!

He had a pretty good time licking the salt off of french fries, too. He even nibbled little pieces off & promptly spit each one into his lap. He likes to pretend to eat socially.

Dexter systematically put cube after cube of extra sharp cheddar cheese in his mouth.

When every last cube was gone & he was stuffed full...

he signed "please" so we'd give him more. Uh, no Mr Hamster Cheeks, how about you chew & swallow first. Geez, It's like he WANTS to choke & die.

PS- Despite how it looks, Dexter does not have a dirty face. His forehead is full of bruises in varying shades of blue & green thanks to the drumsticks his Papa got them for Christmas. Also his poor cheeks & chin are dotted with spots of eczema. These kids, it's always something...

Simon had his first taste of raw onion. He didn't seem to mind the flavor, but it was a little too stringy for his personal preference.

On the other hand, he had no issue with eating his lemon wedge, rind and all. What a goofball.

I should mention that I LOVE these eating smocks for when we dine out with the boys. They cover their entire shirt and part of their lap. Rarely does any food find it's way to their nice clothes underneath. Totally worth the $4.99 per 2 pack at Ikea. No I do not get any compensation for that statement, just a helpful tip from a mom of multiples.

This is the only picture I got of the park because when these monkeys were let loose, they all ran in opposite directions. Well, Linus crawled slowly but surely away from us, but you get the idea. I always laugh at the "No Ducks" sign at the gate. Who is it for? Are ducks supposed to read it and know this is a duck-free zone or are people so prone to bringing their pet ducks that a sign had to be erected?

Christmas Fun

2011-12-29T01:01:00.001-06:00

It was so nice having all three boys home for Christmas. We opened our gifts the night before so we could get on the road the Christmas morning without having to rush through things. The boys had so much fun ripping the paper and playing with new things. The next morning we all piled into the van for their first road trip. Simon slept the whole 2 1/2 hours while Dexter and Linus only took a 45 minute nap. I was worried they'd be Grumpy Guses, but they did great. After a few hours of food, fun and family time, we piled back in the van. This time Dexter & Linus slept the whole way and Simon stayed up. He decided he'd had quite enough of his car seat when we were about an hour from the house. Poor guy was crying and signing "all done" over and over. I felt so bad for him. All in all, the boys did amazing for their first trip & Christmas was a hit all around.

Ripping into the first gifts of the night.

I love Simon's face in this picture. He's like "Do you see this???"

Going back for more.

Once these squeaky chicken eggs were opened, the boys were no longer interested in opening any more gifts.

Trina: Hey boys, look at this awesome present.

Dexter: Have you seen these eggs?

Simon: -nom nom nom-

Linus: This puzzle would be so much more fun with an egg on it. There, perfect.

More fun with eggs...

Watching Trina blow up their new bouncy donkey...while playing with eggs.

Sleeping on the way to Papa & Grandma Liz's house.

Yay for more presents.

Simon was SO excited.

Simon & Linus were content with chewing on the drumsticks, but Dexter had something else in mind.

Poor Linus kept getting his hands smacked. Not sure why he continued to put his hands back up there...

Christmas Cheer

2011-12-25T09:59:00.001-06:00

Merry Christmas Everyone!

Love,

Simon, Linus & Dexter

(and their moms)

Hello Again

2011-12-22T23:18:00.000-06:00

I am not dead, nor being held hostage in a wifi-free zone, nor computerless, nor have I turned Amish and forsaken my electric ways, I am just a combination of tired, busy, lazy and busy. Did I mention busy?

The boys are 14 3/4 months old now. I can scarcely believe it. I'm not going to recount everything that has happened in my 5 month hiatus, but I'll give you a quick run down. Simon & Dexter are running ALL over the place ALL the time. They are starting to climb, successfully, onto things that they can then fall off of and cause themselves a great deal of bodily injury. Speaking of injuries, Linus injured his shoulder a few months back. it's healed now, but still pops. Also Dexter bashed his face and ended up with stitches in his lip. Simon is the only one who hasn't made an ER run. I always expected him to keep us in the ER since he's fearless and athletically geared. Shows what I know... Linus started crawling about 2 weeks after his birthday. It was slow going at first, but now he's a champ at it. He still hasn't pulled up to standing, but I think it will be fairly soon. He can stand up for about 2 minutes if you prop him against something sturdy. Simon & Dex can say several words and are very good at signing. Linus doesn't really talk, but has coupled sounds with a few signs. He says "baaaaay" when he signs baby, "ahhh" when he signs hat, etc. It seems these boys learn something new every single day. Their personalities are really blossoming. I love how they play and interact with each other. When Linus is fussy, Simon will pat his head and say "baaaby" really sweetly. It only makes Linus madder, but boy is it cute. :) When Dexter takes a toy from Simon he throws himself to the floor in a flump and cries like someone dear to him has died. Tonight Simon and Dexter were hugging and kissing each other and laughing about it. No matter if they're laughing or crying, hugging or fighting, these boys are the best of friends. I hope they always remember to stick together, thick or thin.

10 Months

11 Months

12 Months

13 Months

14 Months

Assorted Pics From The Last Few Months

Playing with their stuffed fruit.

Who needs toys when you have boxes and Tupperware?

Our first 2 family photos.

Can you believe it took so long to get all 5 of us in one picture frame?

All tuckered out.

Enjoying some of their birthday presents.

Halloween Costumes

Nothin better than baby butts!

You can really see how "wee" our WeeMan is compared to his beefy brothers.

The boys LOVE Signing Time.

They were all fighting to sit on my lap when I got home from work.

These boys make me SO happy.

G-Tube Placement

2011-08-07T22:15:00.001-05:00

Linus had his 7th surgery, a g-tube placement, on Monday, July 11th. My mom drove in the day before so Trina and I could both be with him at the hospital during his surgery and for the first night. I was mostly in denial about the whole thing, like it wasn't really going to happen. Even so, I couldn't sleep the night before. After what amounted to a short nap, we got up at 4AM, got ready, packed up Wee and were on the road less than an hour later.

Driving up to the hospital is like going back home. I feel like I know every inch of that place. We're surrounded by familiar faces, sights and sounds every time we go in. Even the security guy recognized us and greeted us with a "You're back!" and a smile. Waves of nostalgia hit me as we road the elevator up to the 17th floor to sign in and wait to be taken back to pre-op. We sat in the Heart Center Family Waiting Room with a buzzer like so many times before. The hour and a half we waited seemed to simultaneously fly by and drag on. We spent the time with our boy, laughing and snuggling and trying not to think about what was coming. Then our disk was flashing and vibrating. It was go time.

We hopped back on the elevator and rode it up to the 18th floor. You see, even though Linus was having a gastrostomy performed by a GI surgeon, it was done on the cardiac floor in the cardiac OR with the cardiac nurses and the cardiac anesthesiologists. See the pattern there? Linus is, first and foremost, a cardiac patient. We were relieved to learn this was how things were done. They know Linus there, they understand how fickle he can be and how fragile he is regardless of his outward appearance. We were absolutely thrilled to find out Linus's anesthesiologist was an "old friend" of our boy. They've had lots of one on one time in previous visits both in and out of the operating suite. We went through the familiar motions of talking to the surgeon, the anesthesia team, some nurses and signing or initialing a million different things. Yes we know what's going to happen, yes we consent, yes we know he can (but probably won't) die, yes we still consent. Then the time came for him to leave. We each kissed him, handed him over to his anesthesia buddy and off they went smiling at each other. I surprised myself and didn't cry.

Trina and I headed back down to the Heart Center Family Waiting Room to, you know, wait. I hate waiting. My stomach was in knots. I wanted it to be over already. I tried to pass the time by reading, but couldn't focus. I ended up mindlessly surfing the net. An hour and a half later we got word that the surgery was finished. We were sent to a consultation room to wait for his surgeon to come give us a run down of how the procedure went. The door opened and we were surprised to see his cardiologist walk in. My stomach lurched before I saw the big smile on her face. It took me a frightening millisecond to realize that she wouldn't be smiling like that if she was bearing bad news. She told us that as she was upstairs performing a TEE on another patient, she looked up to find Linus smiling & floating in the window Peter Pan style. I couldn't help but laugh. This is exactly why we love the TCH staff. Who else would fly your kid to surgery making sure to stop by and say hi to his favorite people along the way? She said he looked great and had asked them to do an echo while he was under anesthesia so he was going to be upstairs for a little while longer.

A few minutes after she left, our GI surgeon popped in. He said the procedure went perfectly. No issues with anesthesia, no unexpected bumps and no blood transfusion was needed. We were practically in shock. Our kid didn't throw any curve balls? That's so unlike him. The fact that he didn't need blood was down right unimaginable. He ALWAYS needs blood. This boy is mildly to moderately anemic on a good day. He's never had a procedure and didn't need blood during and after. He's had 22 transfusions for Pete's sake. Ah well, that's my boy. He's always doing the unexpected and luckily it was for the better this time.

Another 30 minutes passed before we were able to go up and see him. We were both so anxious to be in the same room with him again. Being buzzed through the CVICU doors gave me another shot of nostalgia. Once again we were more than pleased to see who was taking care of him. It was one of Linus's favorite nurses who's know him since he was a teeny guy. I felt a sharp pain at seeing him knocked out and covered in tubes and wires again. I couldn't help but notice that he looked bigger in the hospital bed than the last time he was in one. It made me realize how much he'd grown since he'd been home. As we stood there taking it all in, he began to stir and was immediately given a dose of Fentanyl . The saddest look crossed his face right before he drifted back off to sleep. A short time later he was able to trade in his O2 mask for a nasal cannula. The next time he came to, he was in agony. They started him on Morphine and thankfully it kicked in pretty quick. I can not stand seeing this kid in pain. He has been through too much in his short life already.

News spread quickly that Linus was on the floor. He had nurses, therapists, techs and doctors coming by in droves to see him. I overheard a "new to us" doctor trying to do rounds the first night. He started off with "This is Linus who, apparently, everyone knows" he was then cut off by squeals and part of his troop running into the room to eyeball our boy. There is no denying that Linus has some serious admirers on the 18th floor. We kept hearing slightly different versions of "I'm so glad to see him, well, you know, I'm glad he's not sick, but it's great that he's here." I completely understood. I was happy to see all of them, too. Especially since he wasn't sick, and just needed a little tweaking. Linus only had to stay in the CVICU for 24 hours or so before being transferred to the cardiac floor. I was actually a little sad to leave so quickly. Even when we were downstairs, Linus's buddies continued to come see him. As people came on shift and learned he was in the hospital or if they were going to be off for a few days and wanted to say good bye in case he discharged or even when they just needed their Linus-smile fix, they'd pop by. His day nurse made a comment about him having a revolving door and asked me if everyone was coming to see me or him. I laughed and told her Linus has WAY more friends than me. He's a popular kid.

After it was apparent that Linus was doing well, Trina left to go home to the big boys. I stayed with Wee. His first 3 days were a little rough. He was either uncomfortable or in pain all the time. He wasn't sleeping well and actually popped a tooth through just to make things a little harder on himself. Other than the pain, he only had two other issues. His blood pressure was staying a little on the low side so they cut one of his meds back a bit. He also relied on the oxygen for a bit longer than normal. This was probably due to his being a little anemic and because the pain was causing him to take more shallow breaths. After a few failed attempts, he was finally able to come off the oxygen on the 3rd day.

The day after surgery, they ran a little Pedialyte run through his tube to see if he tolerated it. He did well so over the next 24hrs they gave a little more and a little more. The next day he was able to have some milk through his tube. Then a little more and a little more. He started vomiting that night so we had to back off a bit and raise his dose slower. It seemed to work for the most part, but he still vomited some. They weren't too concerned since he pukes likes nobody's business at home. The surgeon's people came by and looked at his site. They deemed it suitable. His chest x-rays were clear. His stats were good. Things were moving right along. We heard rumors of discharge.

Trina and I traded places so we could each spend some time with our other boys. On Friday, the 5th day of Linus's admission, I brought the big boys up to the hospital to visit their Mommy & brother. As I was driving I got a call from Trina. They were going to let Linus come home. What perfect timing! We all hung out for a few hours in Linus's room waiting for the paperwork to go through then we got to leave as one big happy family.

It took us a little time to get comfortable with Linus's new gear. The first few bandage changes weren't the fastest or the prettiest for that matter. We learned very quickly that he was not to be without a onsie ever. Not even for a minute. Keeping a foot long tube out of his grabby little hands is no easy feat. There have been a few bumps along the way. We've had a few scares with green drainage accompanied by some redness around his stoma, but luckily no full blown infection. He ended up popping his stitch and bleeding a bit at the 2 week mark. 3 or 4 times his tube extension has popped open and allowed all of his stomach contents to drain out, soaking his bed or whoever is carrying him. Once, the entire extension came loose from the tube and he lost a full feed. Ugh.

Things aren't so scary or awkward 4 weeks out. Like with everything else, practice definitely makes perfect. Trina's gotten pretty good at "burping" him by hooking an open 60cc syringe up to his tube and tickling him or doing bicycle legs until the bubbles stop. We can hook up or unhook his feeds in the dark with only slight fumbling. Bandage changes are now one man jobs. Things will get even easier when Linus loses the PEG tube and gets upgraded to a Mic-Key button next week. All in all I think we're getting the hang of this tube stuff.

Linus & Trina having a conversation while waiting to be taken back to pre-op.

Linus hammin it up, as usual.

Getting in some last minute snuggles before having to hand him off...again.

The sweet nurse put a bandage under his ID anklet so it wouldn't irritate his fragile skin.

Linus right after after surgery. I was SO glad he wasn't still on the ventilator and a little surprised to see an oxygen mask on him for the first time.

He was mostly out of it for several hours, but was able to be downgraded to a nasal cannula anyway.

Post Surgery Gear

An IV in his ankle.

Pulse oximeter on his thumb.

Blood pressure cuff on his arm.

Bandaging over his abdomen covering his PEG tube and new stoma.

Inside this diaper is a vacuum container draining off any excess stomach contents. The diaper is there in case the container leaks, which it did.

EKG leads to make sure his heart was behaving. It was for once. :)

Linus was pretty groggy when he finally started waking up.

When the pain hit him, it was awful. My heart broke into a million pieces seeing this face. He was started on Morphine, then later Tylenol 3.

The next morning he noticed a bright orange bandaid on his heal. He wanted it.

I was able to redirect his attention to his favorite ball. This goofy kid uses his feet as much as his hands. A side effect from being on his back in a hospital bed for most of his life, I suppose.

We fill up the bulb of pacifiers with water, freeze them and give them to him when he's having teething pain or to distract him when he's gagging. At this moment, it was for his teeth. He popped one through that morning.

He was pretty excited to finally be sitting up again.

I'm always amazed that this kid smiles so much. Even when he's bogged down with oxygen and IV's and leads and even fresh surgical wounds, he's a happy kid.

On the 3rd day he was finally able to be weaned from his oxygen. He was facial tube & tape free for the first time since Dec 21, 2010. LOVE this face.

He decided to grab & pull his new tube. SO not a good idea. My heart dropped and he cried. Luckily no harm was done.

This is Linus getting his very first bit of milk through his new tube. It had been three days since he'd eaten.

All tuckered out. This kid loves to snuggle with his Lovie.

Simon & Dexter having some lunch while waiting for Linus's discharge papers to come through.

Linus thrilled to be home.

Linus & Joe Joe Bear hanging out in the baby cage.

After only a week, Linus started rolling half onto his stomach in his sleep. I'm so glad the discomfort is fading fast.

We tape the tube into a spiral and tuck the Y-extension in his diaper flap so there are 3 fail safes before any pressure is put on his sutures if he decides to yank on it.

This is what Linus's unbandaged tube looked like on day 6. The blue line is just pen. They marked his midline for positioning purposes. Under the tape is a 1" incision.

This is what Linus's tube looked like on day 22. The incision healed up nicely. There is some granulation tissue at the opening of the stoma that will have to be cauterized off. Overall, it looks pretty good.

9 Months!!! ...or so...

2011-07-21T23:15:00.002-05:00

OK, 9 & 3/4 months now since I took so freaking long to finish writing and post this. I've been working on it off/on since July 8th...

9 Month Picture!!!

Stats from their June 30th pediatrician appointment-

Simon: 21lbs 12oz 72%

28.5" long 62%

Linus: 18lbs 3oz 13%

27" long 14%

Dexter: 21lbs 13oz 72%

29.5" long 87%

I can't even begin to tell you how fast these boys are growing up. It seems every day brings a few more ounces or a new skill or another tooth. Speaking of teeth, Simon has 8 now! 4 on the top and 4 on the bottom. Linus just popped his 3rd and 4th teeth this week putting an end to the question of whether or not he'd get them in the same wacky order as Simon. The answer is yes, we have a new vampire redneck in the house. :) Dexter popped 3 teeth this week in a strange, but unique order. He got a top side incisor, then the middle 2 incisors. Strange boys we have here.

Simon still leads the pack in physical prowess. This past month he started crawling, then pulling up, now cruising. There is literally no stopping this boy. He's already bloodied his mouth a few times as he's found his 2 footed balance. I thought for sure he was going to have his first black eye today. He was cruising down the hallway wall and didn't stop when the wall did. His little face lurched forward and hit the corner. It was swollen for a bit, but it all faded away by tonight. He's also already had 2 haircuts. This boy is a champ at growing hair. Simon is such a happy baby. I adore his whole body laughs. He has the deepest voice of his brothers and has now started this baritone "singing." It's adorable! Simon is our best eater. This kid can pack away some food and is rarely picky. The only thing we've found that he won't tolerate is cheddar cheese.

Linus is continuing on his rockstar path. He's gone from a totally floppy baby to one that can sit up unassisted. He's also reaching out for toys he wants and can correct his balance about 75% of the time if he starts to topple over. He's rolling from front to back and back to front. Just yesterday he supported his weight on all 4's in the "crawl position" with very little help from us. He was PISSED about it! Physical therapy is not his bag. He acts like he's being murdered. :) Unfortunately PT is going to be a big part of his life until he catches up. At his original PT eval, he scored between 3-6 months on his skills. I'm not sure what he's at now, but he's not wasting any time mastering new things. Linus's biggest issue, aside from his wonky ticker, is his lack of feeding skills. After a very intense feeding trial, the most we were able to get him to take by mouth was 9oz spread out over an entire day. He's required 26oz a day to meet his caloric needs. 9 times out of 10 he will vomit up anything he takes by mouth. We've made very little progress in his eating purees either. Sometimes he starts gagging as the spoon comes towards him. It's so disheartening. We met with a GI specialist at the urging of our cardiologist. Linus has had an indwelling NG tube for 7 months and this is known to cause problems such as sinus congestion, reflux, oral aversion, esophageal erosion and so on. Linus was displaying all of these things. He needed the NG removed, but unfortunately he couldn't be weaned off of the tube feedings yet. Add to all of that the fact that the tape from the NG was tearing up his face. His cheeks were so irritated they would crack and bleed. Last, but not least, Linus had taken to pulling out his NG tube any chance he got. His record was 3 times in one day. Having to drop new tubes and retape him that often was a nightmare for all involved. It was decided that he should have a g-tube placed and soon. He was scheduled for surgery on Monday July 11. I'll write a separate post about this, but I will tell you it went fine and all is well.

Dexter is our biggest boy again. Not too bad considering he was the smallest at birth. People always think Simon is bigger when they see them since he's built like a tank. Dexter is sneaky big. He's so tall and lean, you'd never know he was carrying as much weight as he does. Dexter was 2 months behind on milestones last month. He had us a little worried. Even his pediatrician recommended he be evaluated. This month, he's half a step behind on some things and ahead on others. He was hitting milestones every day for a minute there. He crawled only a few hours after Simon did. Apparently he was just watching and taking notes. Now he's crawling, pulling up and showing signs of imminent cruising. He's even climbing onto the bouncer to "jump" like Simon does. He's no longer the timid guy. He has a nasty habit of taking things from his brothers just to see if he can. He IS still our sensitive one. He snuggles like nobody's business. This kid has the worst separation anxiety and it kicks in randomly. He'll play independently for an hour one day and not let you out of arm's reach the next. Last week he cried every time I stood up. When I actually took a step or two, he would panic and hyperventilate. The tears this kid can put out would melt the coldest heart. He was desperate to be near me at all times. Even Trina wouldn't do. This was our first bout with that behavior. We've been largely interchangeable until now. If he could have tunneled through my vagina and nestled into my womb, he would have.

Now that we have all 5 of us under one roof and everyone is relatively healthy, we've actually been able to do things as a family. On my days off we load up the minivan and take the boys on errands with us. We've been to the tire store, the grocery store, a fabric store, a friends house and a restaurant. They are SO good in public. We had an entire sit down meal with 5 adults and our 3 boys without a single cry. Not even a whimper! No matter where we are, we get a lot of stares and "you must have your hands full" type comments, but several people have said how good they are and how impressive it is that they behave so well. I couldn't be prouder of them. Being able to go out and do normal, boring things as a family is amazing! I like normal. It's taken us 9 months to get here and it's glorious. :)

Now for the pictures...

Our stylish, custom onsies courtesy of Hope.

We won't make it to a water park before they outgrow these adorable swim trunks so they just played with sand toys in the baby cage. Now I just need someone to photoshop in a beach scene...

Who wants to eat when there are all of these things to explore? Even Linus tossed his bottle and pushed himself into a back bend.

Papa and his handsome grandsons. Doesn't Simon look JUST like him?

The boys having a chat about their toys on "plaid shorts day."

One of his first pull-ups. He's so proud.

This look of concentration kills me. He's got amazing balance. It's all in the tongue.

For a while Linus could only grab one foot at a time.

Now he's mastered the double grab.

Our little guy can finally sit up on his own.

Dexter is crawling like a champ.

Dex likes to "play" this sun like a tambourine. It's adorable!

Eating lots of colors is healthy and fun.

A rare shot of Linus actually taking food from a spoon.

Dex loves cereal.

Blueberries!

Linus likes it best when he's in charge of the spoon. Not much gets in his mouth, but it's still good practice.

Both Simon & Dexter are mastering the pincher grasp.

There is a lot of teething going on here, so we're seeing these faces more often.

Everyone loves frozen binks for sore mouths.

Poor Linus's cheeks are so raw from the NG tube tape. He's also got acid burn down his chin from vomiting so much. :(

Our bad assed Adventure Buggy at the tire store. We got SO many looks/comments with this thing. Not many folks have seen a double decker stroller. :)

Our crew at the grocery store. We LOVE these cart covers sent to us by Three Little Miracles.

Just hanging out in these comfy seats.

Love this coy little smile.

Simon is a very studious comparison shopper. Notice the teething drool?

This is why having a cart cover with it's own safety straps is so important!

Linus is still the happiest zipper chested baby on the block.

It's funny to see how often these two are in the same position or playing the same way. A moment before this shot, Dex had his toy in his mouth, too. Even their hips are cocked the same way.

These guys are such a team. Simon climbs into the chair and Dexter bounces it for him.

There was a ruckus in the baby cage and I found 2 very guilty looking boys when I went to investigate the noise. Dexter and Simon were fighting over the coveted pink & green sippy cup.

Simon won...this time.

I laid my head on Linus's Boppy during playtime and he gave me a very serious look. It was like "Mom, I need to tell you something."

After our talk he just used my head for an armrest. :)

One thing that hasn't changed is the love of jumperoo time. I'm going to be sad when they outgrow confined playtime. :)

For those of you who've asked, yes, Simon & Dexter still do sqiushy baby yin-yang. :)

Our Life In Pictures AKA "I don't have time to write a proper post"

2011-06-04T22:16:00.009-05:00

Simon, Linus & Dexter eating breakfast in their jammies. Life is a million times easier now that they can all hold their own bottles. Mind you, the fact that they CAN do it doesn't mean they necessarily WILL do it. Simon is known for throwing his and leaving. He has better things to do than lay around eating. There are flip flops to be chewed on, doncha know.

Simon now has 4 teeth, about to be 6. They're coming in out of order so he looks like a redneck vampire.

Dexter sits up like he's been doing it forever. This week he's even started putting a little pressure on his feet if you stand him up. Notice how his 12-24 month socks don't quite fit his heel? These boys are growing up ridiculously fast.

Linus is making leaps and bounds in his strength and flexibility. He rolls from side to side with no problem. Today he rolled from his belly to his back for the first time ever. Big accomplishments for a guy who was completely immobile 3 weeks ago.

Trina wanted me to see how Linus could pick up his head during tummy time. He thought it was fun at first.

That didn't last long. Tummy time sucks according to Linus.

But he used the anger to motivate himself.

Look at that form! Perfection for approximately .03 seconds. It still counts. :)

All of our boys are snugglers. I really hope they stay that way. Nothin better than getting baby lovins.

Dexter says "Do you mind? We're trying to cuddle"

This was taken right before bedtime. Look at those sleepy boys.

Dexter & Simon snuggling during nap time.

Trina was rocking fussy babies to sleep. Apparently it was a little too effective.

This is my favorite picture of Simon and I. Couldn't you just eat him up?

Two of my favorite people.

Dexter and Simon cheesin in the baby jail.

Everybody still loves Jumperoo time.

A tired Linus getting his tube feed. He's our only pacifier boy. We give them to him during his feeds hoping he'll make a connection between the sucking and his belly getting full.

He loves his Lovie by Swaddle Designs.

My all time favorite bath picture of Simon. That kid is such a ham!

The boys were playing and Dex kept looking over at Linus sitting in his bouncer.

Simon decided to go see what he was up to.

Linus was super excited about having company.

He even let him chew on his coveted chicken toy.

Linus has started eating a little from a spoon. We're trying to encourage him to eat orally so we can eventually wean him from the tube. Unfortunately it usually ends in puke city.

He LOVES cereal. He ate half an ounce before erupting like a volcano. :/

After Linus puked his guts out, I stripped him down and was cleaning him off. He kept trying to take the wet washcloth from me so I got him his own urp-free one to play with. He loved it. Goofy child.

Simon loves his brother SO much. I have a feeling he's going to be a very protective big brother.

Linus finally found his feet. Still can't reach them, but man do they look like fun!

Dex chewin' on his wooden giraffe. I love this kid's face. What a great smile.

Apparently it's "check out your toys in the nude" day at the baby cage. Who knew? I love the concentration they each have. "Hmmm, yep, everything looks like it's in order here. How about you guys?"

Linus is pretty sure he's "Matthew McConaughey sexy." Just look at those abs!

Remembering a Warrior

2011-06-01T12:58:00.001-05:00

Sending love to the Bissing family and their many friends on this difficult day.

Family of Five

2011-05-18T21:19:00.009-05:00

On May 2 Linus graduated out of the CVICU and downstairs on the cardiac floor. While down there, he started teething and went on a bottle strike. Suddenly he went from eating so fast he vomited, to seeing the bottle and crying and arching his back to get away from it. Luckily he was still progressing with the other aspects of his recovery. Physical therapy was going well & his head and trunk strength was improving. The doctors started weaning him onto a protocol he could come home on. After a few scary bumps and adjustments, he started thriving. On Mother's Day he popped both of his lower front teeth. We hoped teething pain was causing his oral aversion and that he would start eating again. No such luck. The doctors decided that feeding issues would not keep him in the hospital and just focused on his meds. He was almost released on Wed, May 11, but he was sweaty, breathing 100/min, grumpy and agitated. These are symptoms of both withdrawal and unmanaged heart failure so tests had to be done to figure out which it was. "Luckily" it was determined to be withdrawals. They tweaked his meds and he was discharged the next day. After 2 open heart surgeries and 74 days in the hospital, our boy is finally home where he belongs.

Life has been pretty crazy around here. Luckily we were able to transfer Linus from a 3hr schedule to a 4 hour schedule without any major hassle so it meshes better with the big boys. Now he has a 2 hour tube feed every 4 hours instead of an hour and a half feed every 3 hrs. Still doesn't give us a ton of time in between, but it helps. He's down to only 6 meds and 2 of those, Methadone & Ativan, are slowly being weaned. Since he's been home, he's had a pediatrician's appointment and a cardiology follow up. Both went very well. He's 16lbs6oz and 26.25" long. His lungs are clear and his liver is less enlarged. Here's hoping he gets to stay home for a long long time.

Linus is not going to be fun to sleep with when he's older. Look at how this kid spreads out!

This naughty boy is chewing on his PICC line. He's lucky he's so cute.

I nearly had a heart attack when his alarms started going off saying he had a crazy fast and irregular heart rate. When I jumped up I saw he had pulled one of his EKG leads off and put it in his mouth. Brat.

My sweet little oxygen-free cherub.

Less wires and more energy meant it was time to reintroduce the jumper. He had a blast for about 5 minutes. Then he took a loooong nap.

The big boys and I decided it was high time to visit Linus and Mommy at the hospital. Linus was super grumpy and could've cared less that they were there, so they just amused themselves on a pallet.

Linus decided he would much rather wear cute clothes like his brothers instead of this creepy clown hospital gown.

So the next day he got his act together and came home .

Last night after a 2 week feeding strike, Linus not only drank from a bottle, he also held it by himself! We had literally talked the night before and decided he just wasn't going to drink from a bottle ever again and hoped he would take solids when the time was right.

Dex holding his bottle like a big boy.

Simon glaring at me for interrupting his soothing dinner time with stupid camera flashes.

Scenes like this prompted us to figure out a way to contain the babies. Why does he want to break the only 2 teeth he has by chewing metal?

The baby cage was then constructed.

Yay, for containment!

My happy boys. I freaking LOVE these kids!

Seeing them play together warms my heart. There were too many times when I truly believed this would never happen.

Dexter: "Um, I don't wanna chew on this giraffe, lets trade!"

Dexter: "Here, you take this one and you get this one...perfect!"

Simon recently found his toes.

Dexter found his, too.

Linus's tummy-time looks a lot like nap time. Poor kid can't lift his head even one millimeter off the mat. Practice makes perfect, though, so we'll just keep working at it.

See? He's not sleeping, I swear. :)

Linus thinks that baby in the mirror is mighty handsome.

After baby food we're giving the big boys a few sips of water from a little cup. They love it!

I'd say about half of Simon's drools out, but he still has a good time with it.

Dexter is really good at it and smiles so big when he's finished.

Linus got his first taste of avacado today. We can only put a teeny smear in his mouth since he has zero oral coordination. We're just so glad he's taking anything by mouth. I can't tell you what a huge accomplishment that is for him.

I love this kid's smile. He has the sweetest face!

He decided getting onto his knees is kinda fun after all. He's even done some rocking.

Not to be outdone, Simon has started getting on his hands and tip toes.

The other day I put Simon down on his belly and when I went back to him, he was sitting on his butt. We missed it the first few times, but I finally caught him in action.

Look at that proud face.

7 Months...Almost

2011-04-29T20:00:00.000-05:00

Unfortunately, Trina, Dexter and Simon are all sick right now. They have an upper respiratory bug. This is the boys' first illness. We've been so careful with them, but somehow it snuck in. I had to call in to work this week and stay at the hospital with Linus. I really really hope the 2 of us don't get sick. I'm not sure his little body could handle it. I'm being hypervigilant with my hand washing and downing vitamins to help ward off any cooties. I love spending extra time with him, but this is not how I would have chosen to do so. What's another week off work with no pay...

I can't believe how fast time is flying. My tiny babies are growing into kids before my eyes. Simon and Dexter are wearing 12mos clothes now. I have no idea what Linus wears, because he's been neked for almost 9 weeks. That's not quite true, I know he wears a size 3 diaper and 6mos socks. :) They get more and more fun every single day. I spend approximately half of my life kissing, hugging and tickling them. There's nothing better than squealing, happy babies.

Simon is a chunk. He has a Buddha belly and his hands and feet are huge. He can sit unassisted for long periods. He's a champ at standing while holding on to your fingers and is even starting to bend his knees and take little mini steps. His newest trick is to get on all fours and rock back and forth. This kid's going to be crawling in no time. As it is he scoots and rolls anywhere he wants to be. The childproofing has begun. He's finally getting a little better at eating but screams bloody murder when you strap him into his highchair. He loves peas and green beans, but doesn't care for fruits. Even though he doesn't appear to have any new teeth coming in, he continues to drool and chew on everything he can fit into his mouth. He is SO ticklish and has an amazing laugh.

Dexter is stretching out like taffy. He looks thin, but weighed 19lbs12oz a few days ago. We started to get worried about his gross motor skills since he was so far behind Simon. I know you're not supposed to compare, but it's hard not to. It wasn't just that he can't do as much physically. It's also that many of his movements appear jerky and difficult for him. The doc checked him out and said she wasn't overly worried, but that he should be evaluated by ECI for physical therapy. He didn't like the sound of that so he's really turned around this last week. He can now sit unassisted for a very short period and his movements seem a little less jerky overall. We're still going to get him checked out, but we're not nearly as worried about cerebral palsy. Dex is still our most vocal boy. He makes so many different sounds, noises and laughs. He's an absolute crack up to listen to. He'll have an entire babble conversation with you complete with pauses for you to respond. It's great.

As for Linus, he's still in the CVICU. Right after I took the "Happy Boy" picture, he went downhill. He was miserable and sick for an entire week. No matter how many sedation meds they gave him, he would thrash around and cry and moan. He was constantly nauseous and dry heaved all the time. They even had to stop his enteral feeds. He rubbed his head back and forth almost constantly causing a friction burn that Wound Care had to come look at. After an echo, a dozen blood tests and a "team meeting" (minus our surgeon), it was decided it was time to go back in and replace his mitral valve. I took the news pretty hard and had a teeny little break down on the floor of the restroom. Then I got up, took a long walk outside and felt somewhat better. I told myself that I hadn't heard from our surgeon yet and he has the final say. Sure enough, DrM comes through and looked everything over. He added a med, tweaked the others and changed his fluid balance parameters. It took about a day to kick in, but Linus is now feeling better than he ever has. He had an echo on Wed and it showed the very first bit of improvement. His mitral leakage is still severe, but his right heart pressures were a little lower. He's on minimal oxygen support and they've even been able to wean him off of his "ICU only" heart med and replace it with something he can eventually go home on.

As for his "non heart related health" progress. He has physical therapy 3 times a week to stretch and strengthen all the muscles he's been neglecting. Laying on your back for 2 months really messes with you. He's getting pretty good at holding his head up again. His neck and hips are getting more flexible as well. His grasp is strong, but he still won't reach out to grab things. If you show him a toy he wants, he gets excited and clenches & unclenches his fists where they are or brings his hands together. It's like he can't quite figure out what to do. With OT's help, he started eating by mouth again on Thurs. His first 2 sessions left a little to be desired. By his third try, he really got the hang of it. He's allowed to practice twice a day. 2 out of the last 3 tries has ended in projectile vomit. Now that he can eat efficiently, his stomach needs to catch up. It's not used to 2oz going in so quickly. He's still gummy, but is chewing on his hands and works his tongue all the time. Maybe he'll pop some teeth soon. He still sleeps way more than his brothers, but when he's awake, he's SO happy. He laughs and babbles and plays all the time. He has so many visitors, in the form of medical staff, that come and fawn all over him everyday. You should see him batting his eyelashes and giggling at them. What a ham. No less than 4 nurses call him their boyfriend. He's also got a few bromances in the mix. What can I say? This kid's a charmer.

Simon loves peas.

So does Dex.

I was tickling Simon and he kept grabbing my face and hair.

He was laughing SO hard.

If I go "nom nom nom" on Dexter's belly, he laughs til he cries.

I love him so much I just have to squeeze him. He, in turn, squeals with delight.

Poor Linus was so very sick.

He didn't understand why I didn't fix it.

Trying to sleep off the nausea.

So frustrated with it all.

Look at that punam!

He always has his tongue hangin out these days.

Look how long that thing is.

Sly little finger chewer.

He was sleeping so peacefully, I didn't want to wake him up.

So I didn't. He had his first dream feed in 8 weeks.

Look at these beautiful eyes. If you zoom in you can make out one of his more attractive defects. Two rows of eyelashes. :)

Happy Boy

2011-04-15T23:04:00.003-05:00

Because of your smile, you make life more beautiful.

~ Thich Nhat Hahn

Happy Linus & Magnet Babies

2011-04-12T18:53:00.000-05:00

Linus has been in the hospital for 6 weeks now. The impact this has had on us, our family, my job and Linus himself is nearly indescribable. That being said, we've had so many people rally around us to do their very best to ease our hardships. I can't put into words how grateful we are to everyone who's taken on bits and pieces of our burden. We are forever indebted to so many.

This week has brought on big changes for our little guy. It was decided that it's make or break time for Linus. He needs to show his medical team what he's made of. The plan is to sloooowly and gently move him from his invasive therapies to a protocol he'd be able to come home on. If he can handle this, great, wonderful, stupendous, even. If he can't "fly", it's back to the OR he goes. No pressure, right?

He was extubated last Tues and although he's struggled a bit, he's been able to hold his own. They were able to graduate him off of the CPAP, which he hates, onto a high flow nasal cannula. This setup still gives him the support he needs, but in a much less invasive way. He's also had his Methadone and Ativan doses lowered a bit. He had pretty bad withdrawal symptoms for a few days. It was heartbreaking to watch him cry and thrash around. He was absolutely inconsolable during these fits and would usually require a PRN dose of methadone to calm him down. Then like magic, Sunday, he was "our baby" again. He smiled often and Trina even heard him babble a little for the first time since Feb. At one point he stayed awake for an hour straight. Even on this lowered sedation regimen, he usually he only comes around for a few minutes here and there. He's completely exhausted from having to breathe on his own. They've also been able to start a continuous drip of breast milk into his stomach to get his digestive system moving again. Over the past few days they've gone from 1 tsp/hr up to 3 tsp/hr. He's only vomited once so things are going pretty smoothly. The 2 daily issues we have with him are his fluid balance and his potassium. He nearly always retains too much fluid and always always has too low a potassium level. His daily chest X-rays show his lungs haven't changed much one way or the other. They're still "wet." He has an echo scheduled for tomorrow and I'm both nervous and excited to see what it might tell us.

Now that he's off the vent, we've been able to start physical therapy sessions. He has zero muscle tone. It's like having a floppy newborn again. When we sit him up, supported of course, he can't pick his own head up. His chin stays on his chest and his shoulders are slumped. It will take a long time to get him where he needs to be, physically, but at least we've started the journey. Over the past few days, he's started taking a pacifier again. This is a good sign, because he was outright refusing it after having the vent tube and/or an oral-gastric tube in his mouth for so long. This can lead to oral aversions which can translate into feeding issues. This wouldn't be the end of the world, but frankly, this kid has enough issues already.

Simon and Dexter are doing great. Their smiles and laughs fill me with joy down to my core. I can not get enough of their sweet snuggles. I could just squeeze them til they pop. :) Having them light up when I come into view is so good for my soul. They really make this difficult time bearable. Watching them play together and have little babble conversations with each other could melt the coldest heart.

These boys are nearly opposite in everything they do. Dexter caught up so they both have 2 teeth now. Simon drools relentlessly and Dexter may have a dribble every now and again, but nothing major. Simon sits like a champ and is getting more stable with his assisted standing. I've been working with Dexter on his sitting skills and he does pretty well as long as you hold his hands. He still has absolutely no desire to put any weight on his feet, so standing is a no go. Today Trina introduced them to sweet potato. Simon thought it was great and Dexter was wondering what went horribly wrong with his oatmeal. You know how they say that opposites attract? I think this may be the case with Simon and Dexter in the most literal sense. If they are anywhere near each other, they're touching. If they are semi-near each other, they find their way to each other, then touch. It's like a constant game of tag where they're both "it."

This is Linus with a vent tube. He's had this one and others like it breathing for him since March 11th.

This is his "snorkel." He absolutely hates this uncomfortable contraption.

This is the high flow nasal cannula. He tolerates it a lot better.

Simon was super excited about oatmeal time. Look at those teeth!

Dexter had oatmeal all over his face and he couldn't have been happier about it.

Simon can sit up like a big boy. Notice Dexter's hand on his foot, he's a spotter. :)

Dex may not want to sit or stand, but he does the "push up" position like a champ.

This is how they start out sleeping, on their backs with lots of personal space.

Less than 30 minutes later they're like a squishy baby yin yang.

Dexter: Hmmm, I sure would like to play with that giraffe.

Simon: Nom Nom Nom

Dexter: Here, let me show you something...

Simon: Ok, I suppose we can share. Nom Nom Nom

Dexter: Yes! Mine!

Simon: I...uh...but...

Dexter: Here, lets snuggle while I play with this.

Simon: OK, my fingers taste pretty good anyway. Nom Nom Nom

Our Boys Are 6 Months!

2011-04-05T16:00:00.000-05:00

Trina and I take turns staying at the hospital with Linus so we both get to spend quality time with him. When I come home, I also have to work so the little time I get to spend with my big boys really has to count. They are growing so fast and learn new things every minute. Their joyous laughs and bright smiles really keep me going through these hard times. I can't imagine my life without them. Last week they had a pediatrician's appointment. Simon, our bruiser, weighs 18lbs9oz and is 26.5" long. Dexter, our lanky boy, weighs 18lbs5oz and is 27" long. This is the first time in a long time that Simon has outweighed Dexter. Both of them are teething and that means they've been louder and poutier than ever before. It's crazy how they can go from happy to screaming in a nanosecond. Don't even get me started on the drool. I'm going to need flood insurance.

Simon is still our fiery, passionate boy. He does everything to a ten and has the best deep belly laugh. His smile lights up the room and his sad face breaks your heart. Simon excels at gross motor skills. He can sit on his own for over a mintue and can stand while holding on to your fingers. This kid is never where you leave him. He's forever scooting and rolling all over the place and will be crawling in no time. His first attempt at eating cereal was hilarious. He kept wildly licking his lips which mostly caused the cereal to leave his mouth and slide down his chest. He definitely liked the flavor, just couldn't figure out how to take it from the spoon and swallow it.

Dexter is so so sweet. He has the cutest little smile and has the habit of wanting to touch and hold your face while he giggles and talks to you. He is very vocal and has started "growling" lately. It is SO funny. He also does this scream-laugh that causes his voice to go raspy in the middle. It sounds like he's hitting puberty already. He has zero interest in sitting and jerks his feet up like it burns if you try to stand him up. Totally not his bag. He had his first taste of cereal the other day and was an absolute champ at organized swallowing. He got at least 75% of it down.

Linus is still in the CVICU. We have no idea how much he weighs or how long he is. His measurements are all about organ function, fluid balances, medications, blood gases & chemistries. Since my last post, he's had his central line, left atrial probe, chest tube, dialysis tube, arterial line, foley cath and PIV removed. He's had a PICC line placed and just this morning traded his ventilator for a CPAP. He's had his feeds started, stopped, restarted, lowered and raised in response to his GI function (or lack there of) & paused for scheduled procedures. He's had daily chest X-rays that have ranged from crappy to really crappy. His one echo was disappointing to say the least. It showed his mitral valve leakage is back to "upper moderate". This was crushing news. The decision was made to try and manage him medically for as long as possible before going in for a 3rd surgery. No one knows if this is possible let alone how long it may work. All we can do is continually test Linus's limits and respond accordingly. We're hoping this course of treatment allows him to graduate to the cardiac floor and eventually come home for a while. It's really anyone's guess and no one around here makes any promises. He's had his share of ups and downs but if you look at the big picture, he's slowly making forward progress.

One of the scariest things to happen was last week when he decided to have several pulmonary hypertensive crises. They were terrifying to watch. One of them happened while his nurse and I were repositioning him after a chest X-ray. He just went rigid and starting turning deep purple from head to toe. The alarms were all blaring. He was clutching my finger and I watched his eyes go glassy then sort of blank. That's when he went limp and his grip loosened on my finger. I thought we were losing him. The numbers on his screen (blood pressure, heart rate, oxygen sturation) were all lower than I'd ever seen even though the nurse was pumping oxygen into his lungs with a resuscitation bag. Another nurse popped in and was told to go get "everyone". Luckily it passed and he came back. His room was filled with doctors, nurses and therapists all breathing a sigh of relief and coming off an adrenaline high. I was a wreck and his nurse said that although she doesn't scare easy, he'd really shaken her. This kid is going to give me an aneurism. Just watch, he's going to live to be 93 and I'm going to die young of heart failure due to Linus-induced shock.

These boys get more and more handsome every day. They LOVE playing with each other and are always holding hands.

Is there anything cuter than tiny butts in tiny blue jeans?

Simon is getting really good at holding his own bottle. These little medicine bottles are a snap for him now. The big ones take more effort, but he's getting there.

Uncle Troy brought home a balloon and I thought Dexter was going to burst with joy. He would slap it and kick it then look at the adults like "Do you see this? It's AWESOME!"

Teething causes Dexter, not to mention Simon, to have this face...often.

It also causes leaky babies. Notice how the drool stretches all the way down to the puddle forming on Simon's hand.

Everything and I mean EVERYTHING goes into their mouths these days.

Simon is sporting two teeth now, while Dexter & Linus are still all gummy.

This pair of grumpy faces are a direct result of flash photography being introduced into our nap time.

When Linus has a lot of fluid in his lungs, he foams at the mouth like a rabid dog.

This face breaks my heart. I can't help but feel like he's wondering why I'm not making it all better. Takes more than a Mama's kiss to fix this booboo, little one.

Surgery #2 In Photos

2011-03-24T22:48:00.012-05:00

I keep trying to write this blog, but between my shifts at Linus's bedside, caring for Simon & Dexter, trying to work and Linus's ever changing condition, I'm finding it impossible to get my thoughts organized enough to type out. I promise to post a detailed blog soon. I will tell you this, Linus's mitral valve had a 2nd repair as opposed to being replaced. True to form, he is proving to be a difficult and unpredictable patient & this surgery has yet to be labeled either success or failure. His family, friends and medical team are all hoping he stops having so many set backs and starts making steady forward progress. Here are some pictures to look over while I gather my thoughts.

Holding Trina's hand the night before surgery.

The day after surgery. Still looking pretty beat up.

Two days after surgery. Starting to look a little more like himself. The dark line going from under his right cheek to the side of the bed is delivering a blood transfusion into his central line.

This inflatable raft looking deal is called a Bair Hugger. It fills with heated air to keep him warm. His temp dropped to around 92'F a few days after surgery!

Trina taking advantage of his semi-conscious state to trim his nails. He still curled his fingers in protest.

Photographic Tour Of Linus Post-Op: May be difficult to look at...

Linus's room with all of his gear.

Full body shot right after surgery

The pad on his forehead is a NIRS (near infrared spectroscopy) that helps monitor his cerebral perfusion. In other words it lets us know if his brain is getting adequate blood flow.

The tube taped into his nostril is attached to the ventilator that breathes for him. The tube in his mouth went into his stomach to remove any gas or extra fluid. The circular stickers on his shoulder & chest are EKG sensors.

Linus has a central line is in his jugular. It has 2 lumens, or access tubes, so all of his continuous IV fluids and meds can go through one and the other can be used for PRN meds or blood transfusions. It also takes real time central venous pressure readings.

The tube with blood in it is his chest tube. It pulls the extra fluid and blood out of his chest cavity. The clear one is his peritoneal dialysis tube.

This box has a slightly lower pressure than his chest so the fluid drains into it. This way it can be collected and measured.

The probe with the LAP sticker goes through his chest wall and into his heart. It measures the pressure in his left atrium.

This is his peritoneal dialysis pole. The bag at the top contains the sugar water that is pumped into his abdomen.

The green "blanket" is a warmer that his dialysis tubing sits inside. If the fluid wasn't warmed, his core temperature would drop drastically.

This is where his dialysis fluid is collected and measured. It was pink the first day and has slowly turned to a pale yellow.

The blue cuff is a soft restraint. Linus is very "grabby" and would gladly rip any and all tubes and wires from his body if given half a chance. The tan bandage on his thumb is a pulse oximeter. It measures the oxygen perfusion to his extremities. The bandaid on his forearm is where his IV was removed after it clotted off.

He has an arterial line in his left wrist. This is used to take "real time" blood pressure readings and to get blood samples to measure arterial blood gas. He has another pulse ox on his middle finger.

After they placed his wrist arterial line, it gave them some trouble. They put a 2nd arterial line in his femoral artery as a back up. This was able to be removed after a day or so when his wrist line proved to be reliable.

The white oval on his right foot is a temperature pad. he has a 3rd pulse ox on his left big toe. The tube to his left is his chest tube and the tube on his right is his foley catheter. This drains the urine out of his bladder.

This is where his urine is collected, measured nd checked for color changes.

Back To Surgery

2011-03-21T11:06:00.003-05:00

Linus's last 2 echos have shown that his mitral valve has severe regurgitation. It lets just as much blood flow backwards as it does forwards. He has developed pulmonary hypertension as a result. Linus has been difficult to keep stable since he crashed on the 11th, but his weekend it got worse. Despite the fact that he is on a minimum dilution protocol and 4 diuretics, his body started taking on fluid again. Fluid is practically pouring into his lungs. Now his kidneys are starting to show the effects of the medications. We're losing ground. Tomorrow morning he will go back into surgery and have his ruined mitral valve replaced by a mechanical one. This procedure is very dangerous. It has a 20-36% mortality rate in children under 5 years. The fact that he is under 6 months puts him at the top of that statistic. He will have to be on blood thinners for the rest of his life so that clots do not form on his new hardware. This in itself is dangerous. It is very difficult to regulate blood thinners in an infant. They grow so quickly and have a tendency to spit up and "lose" some of their dose. Too much and they can bleed out, too little and they can develop fatal clots.

Right now I'm mostly numb. A few days ago when I felt the plan shifting from "lets try to get him as healthy as possible so we can avoid surgery" to "lets get him as healthy as possible so he does well in surgery" I had a good, long, thorough breakdown. I think I cried for 4 straight hours. It was a great pressure release. I'm still scared to death, but I've come to accept that we are out of alternatives.

A diagram on how the replacement is done.

His new valve will look like this.

What Can We Do? + A Mini Linus Update

2011-03-19T21:49:00.012-05:00

We have had an overwhelming number of people ask us what they can do for us. Up until now we've mostly answered "We're doing ok, but thank you so much." This answer is no longer working as it's obvious that we're struggling. Not only that, but people genuinely want to help, to feel needed, to be a part of WeeMan's fight. I completely understand that. I've always been in the "it's better to give than to receive" category. Unfortunately that means I have a hard time asking for or accepting help. Giving is so cathartic, so energizing, so uplifting. Being in need is none of those things. These feeling are something I have to work on. To kick off my journey to acceptance, I present you with this list of things you can do if the mood strikes you.

1) Keep us in your thoughts. Say a prayer. Light a candle. Wish us well. Send warm fuzzy feelings. However you express your love and support, we feel it.

2) Give blood. Linus is up to 18 blood transfusions now. He's also used other blood products such as albumin and packed cells. It'll take me forever to replenish what he's already used, let alone what he will continue to need.

3) Visit Hope's page and grab a Linus button to display on your own blog.

4) Help Linus and other congenital heart defect survivors by sending donations in honor of Linus to any of these non-profit organizations:

Erika Kate Foundation

The Ronald McDonald House

The Children's Heart Foundation

It's My Heart

5) If you'd like to help specifically with Linus's growing medical costs, I've installed a PayPal Donation button to the right.

I promise to write a detailed update about Linus very soon. Maybe even tomorrow. I keep trying to, but I can't seem to find the strength to type it all out. I will tell you this, he is not doing very well, but continues to fight. At this point there is a very good possibility he will be back in surgery next week. The procedure they're proposing is very dangerous and our surgeon is trying to avoid it at all costs. Unfortunately we're running out of options.

So swollen. He looks like a miniature sumo wrestler.

No matter how sedated my boy is, he always wants to hold your hand. Sometimes all he can manage is a little finger twitch when your hand touches his. I assume this is because he hasn't been held in weeks so this is the closest thing he gets to a snuggle. Whatever the reason, it warms my heart.

I was so relieved when the swelling went down & he was finally able to open his eyes. If only it wasn't such a sad expression. I miss his sweet smile SO much. I ache to see it again.

Linus's chest xray. The lungs should be a clear dark black instead of that hazy grey and neither his heart nor liver should be anywhere near that big. The 6 twisty tie looking things are sternal wires. They're keeping the 2 halves of his breastbone together so they can heal. the bright circles and wires are his EKG leads.

This cute little guy showed up in Linus's bed the other day. it's not uncommon for a new blanket or toy to be dropped of by volunteers. They are so sweet.

Deep Heartfelt Gratitude

2011-03-17T21:51:00.005-05:00

I can't even begin to express how much the love and support we have received as of late has touched me. People have been crawling out of the woodworks to offer their time, prayer, hope, financial support, babysitting, ears and shoulders, anything and everything I could ever imagine. I am shocked and overwhelmingly moved by all of this. This has been such a difficult and soul crushing few weeks. I know for a fact I wouldn't be where I am mentally and emotionally without all of you. The weight of these days are too heavy for our little family. Luckily we have legions of kind souls willing to each take some of our burden. I am forever in your debt. Below is a very incomplete list of just a few of the kindness we have experienced as of late.

My mother has spent weeks on and off caring for my boys while we tend to Linus and all of his needs. She even made the 6 hour trip in the middle of the night when Linus crashed last week. My father came to support us at the hospital during Linus's surgery and drove in immediately when Linus went down. He stayed the weekend and made sure we ate and drank and slept properly. He even went out and bought us camping pads so we were more comfortable sleeping in the waiting room on the nights that we didn't get a bed at Ronald McDonald. My sister has watched the boys several times throughout their lives and more recently has taken care of them while Trina and I switch out for our shifts at the hospital. All of my siblings put their bosses and lives on notice that if we need them in any way, they would drop everything and come.

Trina's mother and sister have both flown in and worked themselves ragged helping us care for the boys, the pets and the house day and night. Her other siblings are scheduled to come visit at separate times so the help is spread out over time giving us better long term coverage. Her family also chipped in to hire us a maid to help us with the house so we could focus on our boys.

My coworkers know we have to make the 2-2.5 hour round trip to the hospital every 2 days so we can switch out so they passed around the hat and collected money to help us pay for gas.

The Erika Kate Foundation , an amazing charity, has provided us with both emotional and financial support during these trying times.

Several very good friends (Fiona, Kasey, Vada & Stacey to name a few) have come by the house to help us care for the babies, have come to the hospital and helped us care for ourselves and have made themselves available day and night to listen if/when we need to talk.

Friends and family have started a FaceBook event: A day of prayer for Linus & group: Linus Prayer Circle. To my complete shock and amazement more than 900 people have joined one or the other. My inbox is filled daily with friends, family and complete strangers alike wishing us well.

So many of my family, friends, blog friends, fellow triplet mamas & heart baby mamas text, call, email, message me, leave comments or write me daily. These thoughtful words help me through the hard times. I cherish every single one.

My friend, Hope, made 3 gorgeous blog buttons to share with anyone who wants to post them. They'll help spread awareness for CHD and Linus's fight. Not to mention plaster my adorable child's picture all over the internet for everyone to admire. How can you not fall in love with that face?

My dear friend Traci sent me the most perfect painting of a Robin's nest with 3 blue eggs and made a donation to the Erika Kate Foundation in Linus's name.

The Prayer Shawl Ministry of Bath United Methodist Church sent Linus a beautiful handmade shawl. Betty Harris, a woman dear to my Aunt's heart, prayed for him as she crocheted it. It was then passed around the congregation so they could all touch it while they prayed for comfort, love and compassion. Since it arrived, we have received so many compliments on Linus's "blue blanket." I can picture him curling up with it for years to come.

Dozens of doctors, nurses, techs, therapists and volunteers at Texas Children's have made it their personal mission to care for Linus and keep him as comfortable and healthy as they possibly can. They continually go above and beyond what is in their job description. So many of them have stopped by his room to check on him and chat with us when they were off the clock or not "assigned" to him. You can really tell how much they love our little guy.

I could keep writing all night, but I won't. It's late and past my bedtime. Thank you, thank you, thank you to everyone listed and to everyone who's not. You all have made the last 5 1/2 months bearable and we would be completely lost without you.

Chompers!

2011-03-14T21:42:00.003-05:00

My first born's first tooth!!!

Linus Is Still In The CVICU & The Big Boys Brawl

2011-03-07T14:43:00.008-06:00

Trina and I are trading places every day or two. I stay with the big boys while she stays with Linus and vise versa. It's so hard not being together, but at least this way we get to see more of the boys. We haven't really seen each other for more than 30min every few days, though.

Linus has continued to have complication after complication so he's still in the CVICU. So much for 2-3 days, eh? It's ok. I never believe their estimates. Linus doesn't ever follow the rules of logic and planning. It's just not his style.

I left his room around 2am Friday morning to take a nap and when I got back a few hours later he was on a CPAP. Apparently in my absence he had gone into respiratory distress. He was breathing very rapidly & his oxygen saturation was low. An xray confirmed that his lungs were full of fluid. The doctor decided to try him on a CPAP instead of reintubating him. I'm so glad he did, because it worked and is much less invasive. He was on the CPAP for the bulk of the day and was able to be weaned down to a nasal cannula then nothing the next day.

Saturday night I was taking pictures of him and his eyes crossed. That had never happened before so I went to get the nurse. When we got back, his eyes were almost back to normal. She looked him over and said he was probably just tired. Uh...no. She left and when he did it again I went to get her again. She saw it "full force" the second time and agreed a doctor should see it. He said that since he's alert and his vitals are normal that it didn't appear to be a seizure. He mentioned that he may have always done this and that I might not have noticed. Uh...no. It came on suddenly and he's been doing it off/on since then. Sometimes it's both eyes, but it can be only the right or left. When it's only one eye, he can track things or look at you with the "good eye" and the other one stays stuck inward. At this point we have no idea what's causing it and are hoping it magically disappears. If it doesn't, we'll have to follow up with an ophthalmologist and possibly a neurologist.

Today Linus's lungs were wet again so he was having trouble breathing...again. They lowered his feeds, upped his current diuretic's dose and added a second diuretic. When Trina asked why this kept happening they said that his mitral valve is leaking pretty bad and that may be the culprit. They're going to start him back on his heart failure medicine. The hope is that it will give his heart a rest and the newly remodeled valves will heal faster stopping the leakage. My poor boy. Will this never end?

These pleading eyes kill me.

He keeps a firm grip on my finger all the time. Half the day is spent with my arm half numb and cocked at a funny angle just so he can reach it easier.

Getting a bedside echo while hooked up to the CPAP. How uncomfortable does that thing look?

Sleeping much easier after the CPAP is removed.

We don't have a mobile so Linus has taken to watching TV.

Law & Order is a kid's show, right?

Both eyes crossed in.

One eye crossed, one eye looking at me.

Earlier today Dexter was hanging out on his playmat and I was holding Simon. I put him down next to Dex so I could run to the restroom. I don't get much time to myself, but I should at least get to pee alone, right? The boys started squealing and there was a thumping noise. What the hell? When I get back out to the living room I see them beating the crap out of each other. Apparently they both want the funky hanging zebra-like toy and it has made them forget their manners. I grab the camera, of course, and snap a few pics of the fight. Then I say "Boys! What are you doing?" and they go still. Both of them put on their most innocent faces and look at me like they don't know what I could possibly be referring to. Brats. :)

Kung Fu fighting!

"Yes mother? We were just quietly discussing how much we both like the zebra."

Post Surgery Update

2011-03-03T20:12:00.000-06:00

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

2011-02-27T17:01:00.013-06:00

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

2011-02-25T12:26:00.005-06:00

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

2011-02-21T20:41:00.005-06:00

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...

2011-02-12T22:11:00.004-06:00

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

2011-02-06T22:28:00.003-06:00

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.

January: Blue

2011-01-30T21:24:00.003-06:00

2011 Color Photography Project

FrankenBaby

2011-01-27T21:41:00.008-06:00

So Monday came and went without a doctor bothering to come tell us what the team had decided to do about Linus. Trina put in 2 calls to our cardiologist's office with no reply. Waiting for a decision to be made is always hard, but being left in the dark after a decision is made just pisses me off. Finally Tues morning DrHD came to tell us that it was unanimously decided that it was time for open heart surgery. Trina expressed how confused we were with what was going on. She asked why he had told her the procedure was a success and said it could be 6 months until the next step when here we were getting told 6 days later that it was time for that next big step. He explained that the catheter WAS a success in that the aortic valve had been opened more than it ever had. If that was the only thing that needed to be done for Linus, his test results would show significant improvement and his symptoms would have been rapidly vanishing. They were not. He said he had really believed that this procedure would have bought us a decent amount of time and that he accepted the fact that he was wrong. We appreciated his honesty.

Later that afternoon, Trina received a call from the surgeon's nurse. DrM would come to Linus's room at 8am Wed morning to talk to us about the surgery details and to give us a timeline. My mom drove in so I could make the meeting. DrM was very no nonsense and laid everything out on the table. There are several options on how to "fix" Linus's heart and he won't know exactly what can be done until he's "inside". He expressed some concerns and was very up front about the pros and cons of each procedure he spoke about. Even though he threw a lot of information and medical terminology at us, we kept up pretty well. Luckily I had done some research on different surgical procedures used to treat Linus's different defects. The one thing that threw us both for a loop was when he mentioned that Linus's pulmonary valve had been leaking on/off in a few of his latest echos. No one had mentioned this before. That makes 3 valves that are now having issues. That in itself isn't great news, but the fact that the pulmonary valve being in good shape is an integral part of our "best case scenario" surgical option makes us worry in a major way.

He told us that his surgical schedule was booked for over a month, but that Linus can't wait that long. His condition is only getting worse and apparently the "healthy parts" of his heart are buckling under the strain of compensating for the defective parts. He wants to work on him in the next 2-3 weeks. They don't want him to go back into crisis before they act. Having him "healthy" will greatly improve his chances to make it through the surgery and heal without as many complications. They're going to look at the schedule, decide who to bump and call us back with a date and time. We told him we wanted to take Linus home while we wait for surgery. DrM told us that that wasn't how things were normally done, but he would allow it. We left the hospital that day. We have to go back in for a cardiology check up on Tues just to make sure he's doing ok and to see how his 4 new meds are treating him. I sure do hope that after his surgery, this kid's medicine cabinet gets a little smaller. He takes a ridiculous amount of medication each day.

This part will probably bore most of you, so feel free to skip it. I just want to have the technical stuff down for posterity. Basically Linus has two major problems that need to be fixed in order for him to start thriving. The first issue is that his aortic valve is a mess. He doesn't have the three requisite leaflets and both the aortic annulus (fibrous ring that houses the valve) and the valve itself are too small. Secondly his mitral valve is not formed properly and has become scarred and inefficient due to high ventricular pressures caused by his aortic defect. These two problems are now causing other problems. It's like a cardiac failure snowball. Since the mitral valve isn't doing it's job, his left atrium is enlarged. The high pressure in his left ventricle is also causing the heart wall there to become thickened so that it can not relax properly. This only magnifies the high pressure and makes all the other issues worse. DrM believes the best option for Linus is to repair the mitral valve, do an aortic annulus expansion and to perform the Ross Procedure (pictured in the diagram above). This would hopefully give Linus 7-10 years before he needs another open heart surgery. DrM said he would go to "extreme measures" to repair the mitral valve so that it did not have to be replaced. Not having a mechanical valve put in would save him from a lifetime of dangerous blood thinners. Expanding the tight aortic ring would allow a larger valve to be put there making it easier for blood to leave the heart properly. The Ross procedure is where the aortic valve is removed and replaced with the patients own pulmonary valve, the pulmonary valve is then replaced with a cadaver valve. The pulmonary valve will generally continue to grow in it's new spot giving the patient many more years before it has to be replaced again. Using a cadaver valve in the pulmonary position also keeps the patient from having to get a mechanical valve requiring blood thinners. This is where the importance of a good pulmonary valve comes in. If his is not in tip top shape, it can't be moved into the much more demanding position of aortic valve. We are hoping beyond hope that the leaking is a physiological issue caused by his aortic stenosis and not a physical problem with the valve itself. We won't know until DrM actually looks at the valve "in person" instead of onscreen. If it's not a good valve, a mechanical aortic valve will be used. This is not a good option, not only because of the blood thinners, but also because he will outgrow it fairly quickly and will need it replaced in a few years. I really hope that DrM's 3 prong surgical plan will come to fruition without a hitch. Linus has had enough complications, it's time something goes his way for once.

We can add the hospital's mobile to the growing list of items that have Linus's affection. The socks on his hands are to keep him from pulling out his NG tube...again...

Only a tiny bruise left from where they went in through his carotid artery. Look at that double chin. My little fatty fatty bumbalatty.

I wonder how long we'll have the same color eyes. :)

Not The News We Were Hoping For

2011-01-19T13:00:00.006-06:00

Linus's first 3 catheters were all done during his initial stay at the hospital so this was our first time having to bring him in for the procedure. We asked what the protocol was and how long they expected he'd have to stay in the CVICU. We were told that this procedure would only require an overnight stay and that he wouldn't go to CVICU, just the regular cardiac floor for 24hr observation. This is laughable because my son generally has every complication on the books and sometimes makes up new ones just to keep the medical staff on their toes. The plan was for Trina to stay with him in the hospital and for me to stay home with Simon & Dexter. I took 5 days off of work just to cover my bases.

Wed morning Trina took Linus in at 5am since he was first one the books. I was sad to be across town instead of with Linus, but someone had to do it. This was actually our choice. My mom offered to drive down so I could be at the hospital, but we decided we could handle it between the two of us. After all, we are capable parents and this would only take a few days, right?

They took Linus to the cath lab around 8:30 and called down occasionally to keep Trina updated. It took about an hour to put him under and to gain access. They tried using his right femoral artery again, but had to switch to his left. They were able to use his right carotid artery again with no issue. They took pressure measurements, ballooned his aortic valve and examined both sides of his heart and his valves. Once again he required a blood transfusion to bring up his H&H. The whole thing took about 4 hours beginning to end.

At the consult afterwards, DrHD seemed pleased with the results. He was able to balloon the aortic valve to 8mm, a full mm larger than the last ballooning session. This took the gradient from 42 to 18, the lowest it's ever been. He determined that part of the problem is that Linus's left ventricle is still never fully relaxing. This causes blood to back up into the right atrium which is, in turn, causing it to stretch and become enlarged. Unfortunately there isn't anything we can do about that. He did say that every drop of fluid he took in really affected him so he has to stay on fluid restriction, they were upping his Lasix dose and also adding a 2nd stronger diuretic. Yay, more meds... He said he hoped this combination would last 6 months before we had to do open heart surgery. I actually scoffed out loud when Trina related this to me. 6 months? Yeah right, the longest he's gone between procedures was 8 weeks and we stretched it to 11 with major intervention ie: hardcore meds and a feeding tube.

Linus was transferred to recovery where he should've only stayed for about an hour. Instead, he stayed for nearly 5 hours because he refused to wake up from anesthesia. They had to hit him with Narcan three times before he was awake enough to go to a regular room. They ran another CBC thinking he may need more blood. Luckily he was in the low normal range so his lifetime score stayed at a mere 11 transfusions. Over the next 2 days he had another CBC, had his potassium levels checked, an echo and a swallow study. So much for 24 hours, right? At least he avoided the CVICU and, all in all, everything was going pretty well. His heart rate and respirations were down and his oxygen sats were up. They told Trina that as long as the echo came back ok, they would send him home on Sat. Trina's been home only once and I've been to the hospital only once since Wed. I was so excited that we would all be able to spend a day and a half together before I had to go back to work. I miss my family.

Friday afternoon a cardiologist came in to talk to Trina. She said that Linus's echo did not look good. They found only a slight improvement from the echo taken before the catheter. According to the echo, the gradient was a 38 and the mitral valve had moderate leakage. She said they would be keeping Linus through the weekend and would be presenting his case to the team on Monday. It was her opinion that he would need open heart surgery sooner rather than later. We were crushed at this news. Once again we have one person telling us that everything is roses and another telling us the situation is grave. At this point I have no idea what to believe. I know there are always discrepancies between catheter measurements and echo measurements, but this seems extreme. Nothing to do now but wait til Monday when we can talk to the doctors and ask questions.

Blurry phone pic of Linus getting an echo.

Having a little sponge bath to wash off the funk.

Sometimes Mommy is even better than Food Bag. :)

Having the swallow study done. How cute is the tiny lead loin cloth keepin my future grandbabies safe from harm? :)

Snugglin with my boy.

My beautiful wife and child.

Surgery Reprieve & Serious Gall

2011-01-16T21:22:00.006-06:00

We went in on Friday for WeeMan's echo and to possibly talk to the cardiologist again about surgery. Trina's mom is in town so we both got to go to the appointment. When the tech came to take us back I thought "Hmmm, she looks familiar". This would not be surprising considering how long he spent in the hospital and how many people have worked on him. She seemed a little snippy, but I didn't think too much of it. Not everyone has my winning personality. :) As she was starting the echo we had a very, um, interesting conversation.

Her: "Hey little guy, remember me? I've done several of his echos, in fact I think I did his first one"

Me: "Oh yeah? He was SO small back then. Can you believe how big he's gotten" *beaming with pride*

Her: "Yeah, he WAS small. You have two others right?" *watching the screen and wanding his chest*

Me: "We sure do. He's got two brothers at home with their grandma right now"

Her: "I couldn't believe he was all by himself a few times when I went up to CVICU. I thought to myself 'Man I can't believe this little guy doesn't have any family. He's so cute.' I asked the nurse if he was a CPS case because I wanted to take him home."

Me: *jaw literally hanging open*

Her: "The nurse said she didn't think his mommies would appreciate that and told me he was a triplet so that why you weren't with him all the time." *still looking at the screen*

Me: *shocked silence*

Her: "One of his brothers was still at the other hospital then, is he home now?"

Me: "Uh, um, yeah. They only spent 2 and 3 weeks in the hospital. It was really rough in the beginning when we had them in separate hospitals, then we had one here, one at Woman's and one at home. Not to mention Trina had complications that landed her back in the hospital. We were certainly spread a little thin. *thinking "Why am I explaining myself to this woman???"*

Her: "I just felt so bad for him being all alone. We have so many CPS cases come through here. I'd just take them all home with me if I could. It's so sad when they don't have anyone who cares about them"

Me: "Uh, yeah" *looking at Trina in disbelief*

Her: "OK, I think I have some good shots. let me go show them to the doctor to see if he wants any more" *walks out*

Trina: "Wow, she just couldn't let that go could she."

Me: "Nope, she made it pretty clear what terrible, neglectful parents we are..."

She popped back in to let us know that Dr HD was happy with the images and we could dress Linus. I was stunned at her complete and utter lack of tact. We spent as much time as possible with each of our boys. I will admit that Linus probably got the least of my time, but in my defense, he was the only one who was sedated and on a strict no stimulation order. I had to make a choice on where I was and the 2 conscious babies who needed to be held and touched and soothed usually got top billing. There was nothing I could do for Linus as a parent. I couldn't touch him or hold him or feed him. When I kissed him or talked to him he would sometimes stir and get upset causing him to need even more sedation. I visited him every single day for 2-3 hours. It's all the time I had. Even as I type this I remember feeling so helpless and useless back then. I was the walking dead running on caffeine, shock and fear. My family was spread across town and I felt inadequate. Looking back and using logic, I know we truly did the best we could for our boys, but the spark of guilt remains. Luckily for me I had someone so skillfully stoke it back to full fire if even for a short while.

After a few minutes our Dr's nurse came in to talk to us. He was scrubbing in so he couldn't come himself. Apparently he was very happy with something he saw in the images. he decided that it was worth doing one more catheter procedure before moving on to open heart surgery. They scheduled him for first thing Wed morning. We were both shocked and cautiously happy about the news. Of course we're still worried about how he'll react to another catheter since he always has complications, but it's SO much better than him going in for open heart. I really really hope this balloon lasts him long enough to let him grow big and strong before more aggressive measures need to be taken. After 6 months of age, the risk goes down significantly on valve replacement. That goal is in sight for our little fighter.

Oh yeah, the picture at the top of this post is my son gazing up at Food Bag. I told you he loves that damn thing. His Grandma says he's like a little duck that imprinted on something that wasn't his real mama. :)

Broken Hearted

2011-01-12T15:11:00.006-06:00

Last week all three boys were tired and fussy after their pediatrician's appointment on Thurs. I attributed this to not only the vaccines, but to the very long day out of the house. My boys live in a fairly strict quarantine so they never leave the house and very very few people come over. This is not only due to them being preemies born in flu season, but also because of our fragile little Linus. He can NOT get sick. Not even a sniffle. Needless to say, 8hrs out of the house took them well past their limit.

Friday Linus still wasn't acting like himself. He was super needy and sleeping nonstop as long as he was being held. He was barely taking an ounce by mouth at each feeding. I wasn't positive, but I was pretty sure his retractions were worse. Saturday morning his breathing was definitely worse and he seemed a little pale. While I was at work, Trina emailed our cardiologist who is awesome about replying no matter what time of day. He even wrote us when he was on his holiday vacation. When she explained his symptoms (breathing hard, pale, not eating well, coughing occasionally) he said he would be on shift the next morning, but that Linus was too little and too fragile to wait and that we should take him in. We decided that we'd take him to the ER after I got off work. When I got home. Linus actually looked a little better. We waffled on whether we should take him in or if he could wait til his cardiology appointment on Tues. We decided to wait and that if he seemed worse again, we'd take him then.

A few hours later it was bath time for the boys. I bathed Dexter and he didn't hate it, pretty good for him. Then I bathed Linus and noticed he looked mottled. Then I noticed his fingernail beds were a bit blue. And his toes... Dang, change of plans, again. He needed to be seen now. I finished up his bath while Trina started getting things together for the two of them. Poor Simon, who loves the bath the most, had his cut short so we could get Linus ready for an outing that would most likely end with being admitted to the hospital.

At 5am, I was woken up by Trina coming into our bedroom. I was shocked to see her. I just KNEW they'd keep Linus. I asked how the visit went and she told me she didn't want to talk about it because she was mad and exhausted. Uh, ok. I dropped it, because I know what's good for me. Later she told me how furious she was and what a complete waste of time the whole trip had been. When she got there she had to wait forever, then they took an xray and a sputum sample. After waiting a ridiculously long time, she asked what the hold up was. The nurse told her that his oxygen sats looked good, his lungs were lungs were clear and that his heart didn't look any more enlarged than in his last xray so as long as the RSV test came back negative, they'd send them on their way. Huh??? What about an echo to evaluate his heart function or a CBC to determine if he needs another blood transfusion or a blood gas to tell us how hard his body is working to stay satted? Nope. They just wanted to see if he had a cold and to send him on his way. Trina was beyond mad at this point. When the cardiologist on duty came to talk to her he was dismissive of her concerns. He did not care that Linus had all the symptoms of unregulated heart failure nor that he was maxed out on his meds. He could've cared less that we were told at discharge less than 2 weeks ago that if Linus had ANY new or worsening symptoms to bring him back immediately. When Trina told him Linus was breathing to hard to eat by mouth without choking, his response was to stop feeding him orally, to put it all down the tube. Nice. Obviously these people were going to be no help at all, so she left. 6 hours worth of wasted time and energy.

Sunday and Monday he did ok. Not great, but not in crisis. We would offer him a small amount of food by mouth at each feed. Sometimes he'd get a a quarter or half ounce down, sometimes nothing. The rest went through his NG tube. He slept most of the time, breathed a little easier and we didn't see any more color changes. Tues he went to see his cardiologist who was less than happy to hear about his ER visit. When Trina told him about the doctor's advice on not feeding him orally if he couldn't handle it, he said "That's not exactly a solution now is it?" Ya think?

Unfortunately Dr.HD is not happy with Linus's continued downward slide. He doesn't think doing another balloon catheter would buy us enough time to make it worth it. The first one only lasted 3 weeks and the second one lasted about 8 weeks. These are not the long term results one hopes for with this procedure. He's going to talk to the surgeons about the possibility of repairing his aortic and mitral valves instead of replacing them. They might even be able to only replace the aortic and hopefully repair the mitral. Worst case would be replacing them both. Replacing a mitral valve on a baby under 6 months is very dangerous. They'd have to use a mechanical valve and he'd be on blood thinners for life. Not to mention that he would outgrow anything they transplanted at this point. This would require more surgeries and more transplants down the road. It's a nasty roller coaster you can't get off.

We go back on Friday to have the surgical consult and to have an echo. Linus should have had one on Tues, but someone overlooked the fact that he wasn't on the schedule. My poor kid falls through all sorts of cracks. Until then we're just keeping him as calm and comfortable as possible.

3 Months Old and Huge!

2011-01-06T21:18:00.003-06:00

I can't believe how fast my babies are growing up. It seems like they're older and bigger and smarter every single day. Today they had their 3 month check up complete with vaccines. It's amazing how much time it takes to do anything with 3 babies. We had their pedi appointment, took the rail to Children's to refill Linus's meds, grabbed a bite to eat, took the rail back and it was nearly 8 freaking hours before we stepped foot in our house again!

Simon weighs 12lbs9oz which puts him in the 25th percentile for his age. He smiles the most and has the best laugh I've ever heard. He coos and babbles and will even repeat you if you use his sounds. He is the best snuggler and just makes my heart melt when he hugs my neck. Simon is also our little water boy. He has so much fun kicking, floating and waving his arms in the bath. Simon has gone from being our "laid back guy" to our "hot and cold boy". He's the quickest to throw a fit but also the fastest to smile. Sometimes his face is still red and streaked with tears when he's laughing again. He'd going to keep me on my toes, I'm sure of it.

Linus is 10lbs11oz and is not quite on the charts yet. He's doing pretty well at home on his meds and feeding tube and will see his cardiologist on Tues 1-11-11. He's definitely our most independent little guy but is smiling more and more and has even laughed a few times. He's also started cooing and working his mouth. Linus's favorite past time is to look loving at his "food bag" and talk and smile and laugh. It sits on an IV pole next to his favorite swing along with his enteral feeding pump. You'd think this very dull peice of medical equipment was a damn puppy the way he reacts to it. I swear to you he's never looked at me with half the love in his eyes. If I was the jealous type, he'd be in big trouble. Luckily for him I've chosen to find it hilarious.

Dexter is a whopping 12lbs13oz and in the 35th percentile. Our big boy is so attentive. He can sit quietly and study a toy forever. Dexter mostly hates bath time and seems scared we'll drop him the whole time. How did someone so young become so untrusting? If it were Linus, I'd say he has a good reason to be wary, but Dex? Nope. His biggest claim to fame is that he knows how to fake cry. This kid will scrunch up his face and say "waaa waaa hmmmmmm" then open his eyes and look around like "Did it work? Is someone coming?" SO freaking funny. Cracks me up every time. Unfortunately laughter is not what he's going for so it's mostly backfired for him. :) When he's tired he wants to be held and will rub his face back and forth across your chest and shoulder. Such a sweetie pie, this one.

A Birthday and a Homecoming

2010-12-30T20:47:00.005-06:00

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.

First Christmas & Linus Update

2010-12-26T19:56:00.004-06:00

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.

Happy Holidays!!!

2010-12-25T10:52:00.000-06:00

Dammit: Updated

2010-12-21T16:42:00.006-06:00

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. :(

My Little Men

2010-12-03T20:24:00.004-06:00

I love these babies more and more each day.

How could I not when they look at me like this?

2 Months

2010-12-01T21:19:00.003-06:00

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

Best Turkey Day EVER!

2010-11-25T16:05:00.005-06:00

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.

Picture Time!!!

2010-11-17T21:04:00.004-06:00

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.

Linus's Story: Part 3

2010-11-02T23:00:00.009-05:00

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.