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.