Friday, April 29, 2011

7 Months...Almost

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. :)

Friday, April 15, 2011

Happy Boy

Because of your smile, you make life more beautiful.
~ Thich Nhat Hahn

Tuesday, April 12, 2011

Happy Linus & Magnet Babies

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

Tuesday, April 5, 2011

Our Boys Are 6 Months!

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.