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.

32 comments:

Isa said...

What a beautiful post--I'm sorry to hear that Linus' path is a long, slow one. I hope that you're right about the 93, but not your own future! All three of your boys are such charmers!

Jen said...

The big boys are doing so well and growing like weeds! By the way, I have been really sick since last Thursday and am basically confined to my house, but I'm going to try and have Tiff mail you a box of boy clothes, some shoes and some toys! We love you guys.

laura w said...

What can I say? YOu are the strongest family I have ever known. God bless the "big boys" for all they have accomplished and heres more prayers for sweet Linus! First words bound to be "Yo Adrian" (Rocky)

Kim said...

Thank you for the update and wonderful pics.

The "big" boys are so adorable and growing so fast....

Small little miracles and one day at time. GOOOO LINUS!!!!! You are a true Warrior! Very happy that he was extubated. Tiny steps are great.

Still sending prayers and love for your family. Go Team Linus!

M, Kim and Gracie

Quiet Violet said...

Love the pictures! Those baby teeth!!

Hooray for the PICC line! I've had one and they don't hurt, at least to have in and then taken out. It's MUCH better than an I.V. :) Also, take comfort in the fact that pain medication really does help. I bet sweet little Linus feels pretty good most of the day. :)

One day at a time, sweet Mommas. One day at a time. <3

Sending so much love!

xo,
Violet

K J and the kids said...

Thank you for the update. I'm so happy to know that albeit slow, that it's forward.
Those babies have always been handsome...but I will say that the picture of them holding hands has to be one of the cutest pictures ever.

I just don't know how you maintain these 2 worlds. One with 2 healthy and happy babies...and then your hospital life.
I hope there is soon just one life with 3 healthy and happy babies at home.

Thank you for the update.

Janie said...

We are all praying, wishing, and hoping for your family. May you all continue to find the strength to meet each day.

Janie

Hope's Blog said...

They are all beautiful boys! I am praying constantly for Linus and his team of doctors and nurses.

Poppycat said...

We are teething at our house too so I feel your pain on that front. My boy soaks four bibs a day at least.
The boys are gorgeous and little Linus breaks my heart all hooked up to his tubes and wires. As always I'm wishing the best for him

Next in Line said...

Love the jeans butts. You are right, there is nothing cuter.

Linus sure keeps everyone on their toys. Woozer. He is spunky little fighter.

reproducinggenius said...

You have the most beautiful boys. Hard to believe they are six months already. Linus' expression in that photo is positively heartbreaking. You all are so strong, and he is such a fighter. I look forward to seeing him reunited with his brothers. Hugs to your family from ours. xo

paradykes said...

Happy Happy 6 month! All 3 boys are adorable. I continue to pray for all of you, I'm glad that Linus is making progress. Have you tried teething tablets? They are the only things that gave our Emma any relief.

Crazy Lesbian Mom said...

Thank your for sharing the update. I know so many people have been thinking of your family constantly and praying for all good things. So great to hear about the big boys' personalities and quirks - they are gorgeous. Linus is a champ as you're well aware. I smiled really big at your last comment of him living til he's 93. Yes! Much love to you. May these big picture movements forward help with the journey. Take care ~ Lex.

Clare said...

Been following your blog from the UK for a few weeks since coming across it by chance. Your boys are the cutest ever and you and your wife are the most insprirational people. Keep getting batter little Linus - here's hoping that Linus gets to come home soon. We're thinking of him and you all.
Clare, Lindsey and baby Sam xxx

anofferingoflove said...

what a great update - it was so fun to hear how simon and dexter are doing! they are adorable.

little linus is in my thoughts each day. i hope things continue to improve (and he stops scaring you!). sending much love and strength.

H2 said...

Look how big they're getting! They look just like you, Robbie!! It must be so hard not having all 3 of them together. I wonder what it will be like for each boy once they're all together again?!

jade said...

Thank you for taking the time to update - I visit every day, hoping for some news, and am SOO glad every time it is more or less positive. Keeping my fingers crossed and go brothers - you have such good looking boys, from whatever side you are looking at them!! Just fyi, the drooling may be on and off for many more months to come, so better get the insurance fast...
Lots of love and courage for you all, regards and warm feelings from springtime Belgium

Melissa said...

I am glad to see a post. I have been checking every day and praying much. I am far away geographically, but right there spiritually. Blessings to you.

Ms. Qadeer said...

OMG, your boys are so beautiful. And so HUGE! I'm just imagining all 3 of them together crawling and laughing and wiggling their denim diaper bums and moving a mile a minute.

Seeing the photos of Linus is heartbreaking. You are always in my prayers.

Kara said...

Your boys are BEAUTIFUL!!! Praying like crazy for Linus.

BTW, I'm an avid reader from Northern Kentucky- if there's any THINGS you guys need, I would be MORE than happy to send something. Seriously, just ask- I think if you click on my name you get my e-mail address but if not my blog e-mail address is myothercarisacrane AT gmail DOT COM and you can e-mail me there and then I'll send you my personal address.

mama bea, bao in the oven said...

The boys are just darling. Love those photos! I'm so glad to hear how well they're all doing and that little L is making progress, however slow. I'm looking forward to seeing a photo of all 3 of them holding hands at home together.
We're thinking about you guys a ton, and wishing you continued strength and so much love. Xoxo

addingbaby said...

Thank you for sharing your beautiful pictures. We continue to send you positive prayers and thoughts as Linus improves. xoxo

The Lesbian Next Door said...

I was so glad to read this update. Happy 6 months boys! I'm still rooting for and thinking about little Linus daily. Here's hoping he gets better enough to come home before the next surgery.

BTW, the pictures are beautiful! Thank you for sharing them!

Carrie said...

You have the cutest boys I've ever seen! They are so beautiful, really. It's great to see Simon and Dexter so happy, playful - and oh yes, I know all about the teething fun. ;-) I think about linus every day, and each little victory is so huge. I would not be surprised if he lives to 93 and gives the rest of us heart issues from all the worrying! He is such a sweetheart, and I truly hope that he triumphs over these early challenges. Thank you for posting those pictures, and for maintaining your blog. I know you have more going on than the rest of us likely do, so time is obviously short. It's so great to receive updates, and to see photos of the boys. It brightens my day to see Simon and Dex holding hands! so cute!

Anonymous said...

That picture of the two big boys holding hands is so precious!!
Your courage and strength during this very trying time is so inspirational to me...you must get that courage from little Linus huh? Prayers to all of you!

Megan D. said...

Congrats you guys and I hope Linus gets better! You're in my thoughts.

Heather said...

Oh my goodness! Your boys are so adorable! And you're right, that last picture of Linus is heartbreaking. I am continuing to pray for Linus and you and Trina. Take care!

insertmetaphor said...

I'm thinking about you and sending love and strength to Linus. All three of your boys are so beautiful.

BBB~Waind said...

Praying for that sweetie Linus! I love the buttons your friend Hope made, I took one for our blog too :)

christina said...

the picture of simon and dexter holding hands is so precious! all 3 of your boys are so handsome! thinking of your family every day and praying that everyone makes it to 93!

pleasantlyfurious said...

Great pictures - thanks so much for sharing them. I remember those drool days. So. many. bibs.

M_Squared said...

your blog of your three sweet boys has served as such an inspiration for me. My sweet boy is currently recovering from pretty complicated surgery at TCH (TGA, CoA, ASD, VSD, with a small RV). Seeing how well Linus recovered gives me hope for our Elliott. Thank you so very much. I will keep you in my thoughts and prayers.