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. :)

25 comments:

Jaime said...

All 3 of your boys are gorgeous!! My thoughts are with little Linus!!

ModaresiBeal said...

Glad Linus is improving. So sorry he felt so sick. The other two are just out of control! All soooo cute! :)
-Shirin

Kelly said...

I found your blog when I was pregnant with my triplets. I followed it and prayed for you guys as I wondered how you managed. Now I'm rereading everything you've written as I sit in a Level III NICU with all three of mine. We've been here a month, so now I know all the lingo you use and can relate to the terror of death and trying to sort out what Dr. P says from what Dr. HD says. This is life-changing stuff, eh? My partner and I are sending positive thoughts and prayers for you all everytime we pray for our own- which is constantly. You moms hang in there. You're amazing.
With love,
Kelly and Kristen

Kelly said...
This comment has been removed by the author.
Anonymous said...

They're all so beautiful. Linus will beat all of this and somehow he, and you, will be a better person because of it. Many hugs <3
Jamie Lynn

the flipside said...
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the flipside said...
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salliekeaton said...

Delete Comment From: A Story Of Two Moms



So precious all three, poor little Linus brought tears to my eyes, and being a Mom you feel so helpless when there is nothing you can do to make it all better....praying for healing for you all so you can be home together

Sallie

salliekeaton said...

Sorry for all the deletes and mess up I am not very computer literate and I signed in under my husbands account :)

N said...

They're all so freaking gorgeous. The sad looks on Linus just make me cry, though. I hope he's a laughing tickling fool like his brothers.

Crazy Lesbian Mom said...

I think about your family every single day. Sending you so many good thoughts and prayers.

Kara said...

Your children are SO beautiful! Praying that they're all together with their mommies so soon.

Defining Family said...

Such amazingly beautiful boys! Thinking about you all constantly and always sending love your way.

C and V said...

Your boys are the most handsome boys I've seen. And the eyes on Linus. They melt my heart. Vyvenne and I think of your family everyday. Thank you for taking time out of your hectic schedule to let everyone know how Linus and the rest of the family are doing. Keep your chin up.

Chandra

H2 said...

Love love love. So glad he's taking some of his feedings by mouth. They're all getting so big. I can't believe it's been 7 months. Hope you don't get sick and that Trina and the boys feel better soon.

H2 said...

Robbie- I've moved the buttons to their own dedicated page on my blog. Just wanted you to know that I didn't get rid of them. :-) Here is the link to the new page (with several blog links underneath for instructions): http://twomomsandababybump.blogspot.com/p/grab-button-for-linus.html

Candi said...

thank you for the updates, I feel like I am right there growing up with them with your detailed follow ups. All my love to the family, extra love to linus!

jade said...

Get better wishes to all three sick ones, go Linus and hang in there Robbie, you're all doing great, wish I could have been there to give you some support during the restroom break down - I know many of us are with you in spirit. Kind regards, jade

allie :^) said...

as always, love the pics! so many of us love these little boysies!!! :) thanks for the update. :)

Pomegranate said...

the boys really are beautiful. always thinking of you guys...

Anonymous said...

As mother’s day approaches, I think about the amazing mothers that Simon, Dexter and sweet Linus have. This special day is about moms like you…never ending champions for their children. You are both in my thoughts. Leslie

mama bea, bao in the oven said...

Your sons are so beautiful! Love those photos, and of course the news that Linus got to avoid surgery. Hope the other three are feeling better! We're thinking about you, as always.

Kathrin said...

I there, I don't know how I found you but now I am here.
So glad to hear you have Linus home. Can't wait to see pictures of all brotheres together.
All the best to all of you from Germany.

manda said...

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Liberal lesbians in the south trying to make babies... said...

Yay for everyone being home together - FINALLY!!!