Monday, January 16, 2012

Keep The Beat

I am excited to announce that our family will be participating in Keep The Beat, the 6th annual CHD Awareness 5K Walk on Feb 18. With your help, I know we can meet and exceed our meager fundraising goal of $500. Please visit our Team Linus fundraising page if you'd like to make a donation or if you'd like to join our team and walk with usAll proceeds benefit It’s My Heart, an organization dedicated to supporting families living with congenital heart defects as well as pushing for more research to specifically help children with CHD. 


As many of you know, despite his radiating smile and sunny disposition, Linus has struggled his entire short life with congenital heart and GI defects. He was diagnosed with Critical Aortic Stenosis and 3 VSD's when he was not quite 48 hours old. A few short hours later he was transferred to Texas Children's Hospital and taken in to emergency surgery. Over the next several months he gained more and more diagnoses such as left ventricular dysfunction (downgraded to diastolic dysfunction), mitral stenosis, mitral insufficiency, enlarged left atrium, congestive heart failure, failure to thrive, pyloric stenosis, low GI motility, chronic anemia and more.  He has spent over 5 months in the CVICU and on the cardiac floor during 5 separate admissions. He has had 4 cardiac catheters (3 ballon, one diagnostic), 2 open heart surgeries (1 aortic valve repair, 2 mitral valve repairs), 22 blood transfusions, a g-tube placement, an endoscopy and a pyloric dilation. Linus takes 13 medication doses, 1 vitamin dose and 1 probiotic dose every day. Since he can only handle 1-2oz of 27cal formula every 15-30 minutes and vomits up nearly every single tiny bit of food he eats orally, he has been primarily tube fed for all but 2 of his 15 months. He gets a tube feed during his nap and is also on a continuous tube feed overnight. Each month Linus has 3 physical therapy appoints, 3 speech therapy appointments, 2 dietician appointments and usually 1-3 pediatrician visits. He also has GI and cardiology appointments every 1-2 months where he gets an EKG, echo, blood work, x-ray and exam. He is weak and uncoordinated. He vomits 1-10 times every day and night. He is plagued with reflux pain. His heart is so enlarged he can't comfortably lay on his back or even be reclined without grunting. Needless to say, his life is not an easy one. If you looked at him, you'd never know it. Linus is vibrant and full of life. He is one of the most charming and happy little guys I know. I'm not sure how he manages it, but I envy him. Seeing that killer smile, listening to him giggle, watching him learn new signs to make up for his delayed speech, witnessing the pride he has in himself for finally being able to crawl, it's easy, even for me, to forget how hard he has it and what a long, rough road he has traveled to get here.  

Below is a set of photos that document all that Linus has endured. It's nothing you'd want for your child, for any child. It's not what we focus on or even think about during our day to day. It's hard to look at, but this is Linus's past. 
























































8 comments:

sillywrongbutvividright said...

oh wow ... I followed your story all the way through the pregnancy and since, but just seeing these photos like this really has brought it home again, and brought a tear to my eye ... I am so, so happy that you have your fivesome safe and sound .. love to all of you xx

Wiley said...

The vitality and resilience is what strikes me the most. Our younger son didn't go through anywhere near as much, but was a preemie who had some GI issues that earned him readmission and that is what struck me: how happy and alive he was, no matter what was going on.

K J and the kids said...

Amazing strength !
I haven't forgotten his journey but seeing those pictures sure brought it all back.

jade said...

Keep on rocking moms and sons! Look what you managed to get through. I did read it all, but somehow, I kind of "forgot" the worst parts. Thank you for refreshing my memory and the tears that go with it... It is humbling and refreshing at the same time and I needed this to put things back in perspective. Wishing you a good walk on 2/18 and lots of love and warmth!

Kara said...

I SO enjoy your blog and have been praying, fighting and pulling for y'all!!! :)

Cayirod said...

I seen you and linus today at the hospital I hope he is doing much better!:)

Holly said...

Hello!

I just found your blog! Our family has gone through some of what your family is going through now. The pictures brought back so many memories of when we were in the NICU, hoping our little guy was going to be okay. He had 2 chest tubes by the time he was 36 hours old because his first breath, he blew a hole in his lung the size of a pencil eraser. This pushed his heart to the left, causing heart failure, and so on and so on. He still has acid reflux, but we have him on previcid now and he's doing great. (You wouldn't know it though..) He just turned 7 on the 27th of February and he now weighs 60 pounds!! He's a TANK! I am praying for you all and know that you are not alone! EVER! Much love!

Rachael said...

I just found your blog and I wanted to leave a tiny comment. I look forward to reading more about your beautiful family. I have been searching for other blogs of parents with same sex couples. I am so glad to come across you and your adorable family!