Saturday, March 19, 2011

What Can We Do? + A Mini Linus Update

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:

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.

34 comments:

breakingintoblossom said...

Oh, God. I think about you five all the time. I pray. I meditate. I don't write because every time I try, the words feel cheap. Insufficient. I try to imagine what you must be feeling, having to turn to so many to help your little boy. I don't understand a world where you can have to fight so hard just to build a family, and then have to fight so hard just to keep it. I want for each of us to be able to offer Linus a bit of our strength, our life. Every one of us out here would give him that. I sense that we're all holding hands across the country, creating a circle of love and protection. I pray with my entire being for his healing. My whole heart to his broken one. My love to you all.

Just Another Jenny said...

I'm new to your blog. I wish you much peace, love, light, and health for Linus. Your three boys are beautiful. i will continue to keep your family in my thoughts.

jdf said...

I just found your blog through a button on someone else's blog. It's hard to ask for help and to accept help! But so many people you've never met are really pulling for you and your family. I'm holding all of you in my thoughts. Blessings from London, UK! You are all strong and brave and amazing.

Kathrin said...

I Pray for you!Warm huges from Germany

Amy and Meredith said...

I put the blog button on our blog last night and joined the Facebook groups. Hang in there!

Melody said...

I know that my kid's problems are not every kid's problems, but Simone's complications from open heart caused her to swell terribly. There's a pic on my FB page if you care to look. Anyway, she had a pericardial effusion (pericardium over filled with fluid) and an attrial flutter. They did a pericardiocentisis (required general anesthesia but a relatively simple procedure) and they shocked her heart to get it back into rhthymn. Is Linus's heart in sinus rhthymn?

Kirsten said...

We were just talking about what more we could than pray and hope and send love. Thanks for posting. The pictures are breaking my heart. I cannot imagine what you are all going through. We are constantly thinking of you all.

Kathryn said...

I was thinking of you today when I read this article about preemies that mentioned children on cardiac units. It seems even if studies can't "show" that music and reading stories help these babies, it can't hurt.

http://www.boston.com/community/moms/articles/2011/03/20/study_seeks_to_assess_effects_of_mothers_voices_on_preemies/?page=full

We're keeping all five of you in our prayers!

Ashley said...

Continuing to think about all of you. I just made a post on my blog just for Linus, asking my readers and followers to help support you in any way that they can. You are doing an amazing job so keep it up!!

Melissa Caparelli said...

I am new to your blog and my heart goes out to all five of you. I pray that Linus gets stronger and healthier!

P said...

I have to say that little guy has been through so much in his short little life here but is such a fighter. We are sending postive thoughts and prayers to you and your family. I hope your little man stays strong and continues to fight the battle. In the mean time we are thinking about each of you.

K J and the kids said...

Thank you so much for writing. It's all I can do to wait for these updates. I hope they get better an more positive really soon.
We are going to be in NY in a couple of weeks and I kept telling J...I want Mr. Linus to be home so that we can stop by and give those three tons of kisses. :(
I wish there was more we could all do. Praying for all of you. Sending all of the healing power one can through thoughts to that little but super strong Linus. and also lots of cyber hugs.

hazelstarfish said...

Thank you for giving us ways to help. I only know your family because of BabyCenter and your blog, but what I do know is that you are always there when other families have questions about the journey to parenthood. You all have my thoughts and prayers, and I have posted one of Linus's buttons on our blog. May God bless you all.

boombamama said...

Go TEAM LINUS! just posted to my blog, as well. And added a widget for Linus. You are all in my thoughts every day!

lezbemoms said...

I have tears in my eyes for you guys... poor little linus. I will continue sending warm fuzzy thoughts to both of you and to him.

allie :^) said...

i just loved this post. what you said about giving vs receiving...wow!

shades of hazy, that brings back some memories.

what surgery are they talking about if i may ask?

just love your boys. and that you are sharing from the heart. and that you keep us all in this crazy loop called life.

warm fuzzies to you, trina and boys! :)

to end on this note...you are giving TONS right now. :) givng to linus...giving to simon and dex...giving to trina...to family...to all of us who follow this blog. i'd actually say you are giving quite a bit. :)

Nancy Penter said...

Robin, We think about you every day...I have facebook friends asking how you are doing. Just know there is lot of love out there for Linus. We will keep praying for him....

Laurie said...

I donated blood because of little Linus and will continue to do so. I've also added a button to my blog and have shared Linus' story with family and friends. We are ALL rooting for him. I am sending warm, bright thoughts to all 5 of you every day. I can't wait for the update when all three boys are home with the mamas again :)

KarenFerguson said...

I'm a mom of twin boys (15 months) and I think about Linus everyday - especially when I'm cuddling my dudes (which is a lot). He's such an amazing little guy and such a fighter! Thanks for updating us. Warm hugs and good thoughts to all of you.

Vicki said...

You guys are in my prayers. Your doing an amazing job! Is there a way we can donate blood specificlly for Linus? Just a thought. Prayers from Florida!!

Sabrina said...

Praying, Praying, Praying for Linus, and for you and Trina to have strength and faith as well. My cousin spent 40 days and 40 nights in the hospital with a staph infection in his heart. He almost died several times. He ended up with an emergency valve replacement and St Jude valves. They saved his life. I know it's scary, and I'm praying for the wisdom of the surgeon and heart doctor to work the miracle for Linus that they worked for David. 13 years and counting...

Jam 1 said...

Added a button! I just wish I could do more right now. Your family is amazing and Linus is such a fighter.

Michaela said...

Aawwww, poor boy!!! *cry* I SO hope that he will be become better soon.

Kara said...

Getting the Linus button for my blog and saying insane amounts of prayers for your family.

anofferingoflove said...

thank you for posting this ... i've been wondering what we could do (if anything), but didn't want to bother you with an email right now.

i havent given blood since bird was born, but at our church's next blood drive (they are quarterly), i WILL go and give in linus' honor. xo

mama bea, bao in the oven said...

We are thinking about you guys all the time. The button is going on my blog right this second.

Samantha said...

My wife and I have been following your blog for awhile, and little Linus' fight has become part of what we talk about each day. I can't imagine how difficult this must be for you both, and you remain in our prayers. Over the next week we'll be lighting candels daily as we pray for Linus and your family.
Samantha (and Anne)

Tam said...

Thinking of all of you

glamcookie said...

Thinking of you. There is a blood drive at work on Tuesday and I'll be donating in Linus' honor. Hugs and all positive vibes heading your way.

Gust said...

My little boy Silas is asleep on my lap and it's so hard not to think about your little boys when I cuddle mine. They are the most precious things and my heart aches for Linus. I just want him well, we all do. We spent two weeks on wards after getting rushed to hospital, 4 days in NICU and seeing him sedated was the most painful thing I've ever been through. I can barely grasp what you are going through with Linus. Love to you all, beautiful family x

jtp said...

Sending love and light to all of you.

Julia said...

Donating blood in honor of Linus. Signed up as a volunteer stem cell/marrow donor while I was at it.

Hanen said...

Found you via Pomegranate, but my partner has been reading your story since the boys were born. Sending huge love to all of you and wishing for lots more little wins for Linus xxxxh

Toni Nielson said...

My friend runs this site and has a group for parents in similar situations. A Second Heart - http://asecondheart.blogspot.com/