HLHS

I've realized that I have strayed from my main goal of this blog. It is first and foremost to document Bela's extraordinary fight with her Congenital Heart Defect HLHS. It is to hopefully provide hope and help to others who are going through similar situations with their babies. I just got a comment from a mommy of a newborn baby girl with HLHS and Turners. I was so thrilled that she found my blog and that I will be able to connect with her! She said that seeing Bela is giving her hope. Hope is the best medicine there is!

Bela at Disneyland


I recently found a blog called The New Left Heart Kid (Thenewleftheartkid.blogspot.com) started by Carter's mom to give hope to others with HLHS. In her first post she wrote:

"No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today kids with Hypoplastic Left Heart Syndrome can survive - and do amazing things!"

I couldn't agree more..

Comments

Amy T said…
I recently read a newspaper story about a baby in England also with HLHS and Turner's. Let me see if I can find that. Here:

http://www.sundaymercury.net/news/midlands-news/2011/07/31/baby-born-with-half-a-heart-in-life-saving-op-at-birmingham-children-s-hospital-66331-29149803/

Glad that Bela's doing well!

Amy, mom to Daniel (4 years old, HLHS)
August 19, 2011 at 8:15 AM
Jarod and Tanya Rollins said…
Its so true-I recently came across a coupon mom's blog and her son has HLHS and is now 9 years old. I was so thrilled to see that! Her website is very popular so you may have already heard of it: athriftymom.com Couponing is one of her passions and it started because of trying to save money for her sons treatments. I love to hear stories of success and know that Bela has all the hope in the world fighting for her.
August 23, 2011 at 5:46 PM
Anonymous said…
Hi Amy that's us in the paper! We were on the local news too, but unfortunately Niamh's still in hospital, Im constantly searching for people in uk with the same complications as Niamh, bt can onli find in u.s, so here's a bit about us, I'd be great full if anyone had any suggestions, My daughters a left hypoplast, with turners, she's had a ladds procedure for malrotation and is suffering with ascities gathering in the stomach so now she struggles to breath and requires oxygen due to low albumin. She had a Norwood procedure , but still waiting for 2nd procedure to take place as she is not a possible candidate yet due to the other complications, she's 6 months and been in hospital since birth, cannot find any info or similar cases on the net in uk, can anyone help? Have any advice? Similar diagnosist? Would be much appreciated, thanks :)
November 28, 2011 at 4:26 PM
Post a Comment

Popular posts from this blog

Transplant 2- Honoring her donor, and her Aunt Ju

Image
Early in the morning on October 23rd, Tanner got a phone call that his sister, Julie, just a year and half older than him, had passed away. My sweet mother in law had to receive this devastating news from Bela's hospital room. Although Bela was unaware of all of it, at the same time they were helping my mother in law just outside her room in the hall, Bela's heart rate shot up to 180 and her rhythm went crazy for about 3 hours until they finally got it under control. We still don't really know why, most likely her heart telling us it was nearing its end. In the late hours of that very same day we got the call we had waited for for 11 months. A match had been found for Bela. Tanner had already decided he wanted to sleep there with Bela that night.  As hard as this hospital stay was becoming, there was a tangible peace being there with her in that room.  When he was woken up with the news that night, he stood in the hallway outside her room and wept as the flood of emotions o...
Read more

3 weeks out and doing great!

Image
Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...
Read more

First transplant post

Image
This space used to be very healing for me. I wish I never would've stopped documenting here...I love knowing the first 5 or so years of Bela's life were well documented. But as I sit here with the familiar view of her hospital bed and sounds of beeping monitors, it feels almost necessary for me to write here again. Bela has had 12 incredible years of living life since my last post on here.  We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4,  bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love.  I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.  We've now been inpatient listed for he...
Read more