Wednesday, October 27, 2010

Heart Mom Help

Hello, fellow heart mamas! I need your help...  I have a Google Alert set up to notify me whenever there is a new entry on the Internet that includes "HLHS" or "Hypoplastic Left Heart Syndrome." I specifically look through these for entries from moms-to-be who get the shocking and unexpected diagnosis of HLHS for their babies and post on message boards (BabyCenter, etc.) looking for help/hope. I have a "canned" response of sorts that I use as my basic reply (sharing Chase's story, a link to my blog, etc.) but I also want to include a list of links to helpful, relevant information on the diagnosis. I of course think of sites like LittleHearts (I know I read through EVERY SINGLE HLHS STORY on this site before Chase was born) and the U.S. News Best Children's Hospitals: Heart & Heart Surgery report, but I know there are a handful of other websites that have helpful information about the diagnosis and the prognosis for the promising future these kids have ahead of them. If you have any go-to links that you'd like to share, I'd be super grateful!

I know when we got Chase's diagnosis, I spent a LOT of time on the Internet and was so discouraged by my findings. A lot of the research and statistics out there are NOT at ALL current and I'd want to save these new heart moms the anxiety and fears of reading that kind of stuff and instead point them to some sites that give accurate info and provide hope.

Thanks a bunch!

What a Day!

Well, things have been somewhat eventful around our house over the past 24 hours. Of course, our sweet little monkey turned ONE yesterday... still so hard to believe an entire year has gone by and we've been SO blessed with him in our lives! We celebrated quietly as a little family of 4 yesterday. We started with our traditional birthday pancakes...

ONE!!!

He's not too sure about seeing a candle again...

I'm pretty sure he's contemplating tears in this one...

Such a beautiful boy!

Uh... "cheese??"

Hmmm... it's food, so everything is gonna be okay. Whew!

Yummy!

Last night we let the little guy open his gifts from mommy & daddy and LO. Turns out he does a pretty good job all by himself of ripping the paper off... it just takes him a little while. He got a few more little electronic toys, another book, and a fish toy for the bathtub from LO (I think she may have been thinking of herself with that selection)... We still didn't bust out his new bean bag since he's just not quite mobile enough to handle himself getting on and off the bean bag. I think I might get it out in the carpeted play area later today to give him something else to practice climbing on. He's started pulling himself up on LO's train table, but he has to be motivated and in the right mood. He's not at all interested in crawling on his hands and knees (prefers the BUTT SCOOT over all other modes of transportation, with the army crawl a very distant second, much to his mommy's and PT's dismay). But we continue to make progress each week and that's all that matters to me!

So, yesterday evening LO started a really yucky sounding cough. She didn't eat anything for breakfast and I all but force-fed her lunch (learned that lesson later...).We were standing in the kitchen when she started another coughing fit, and I told her to keep coughing to get that yucky stuff up, and of course, she threw up all over the kitchen tile (much better than the carpet -- yay!). I quickly grabbed a bowl from the cabinet and told her to keep coughing -- she needed to get the yucky stuff out, and sure enough! There went her lunch! (TMI?) She took a long afternoon nap, woke up still not feeling very good, and took a little nap while hubs, Chase and I had dinner. She didn't eat a thing for dinner, and I gave her a nice warm bath to help her feel better. I also gave her some cough medicine and then put her to bed a bit earlier than usual. Hubs and I went to bed later, and around 11:45 PM, LO was standing next to my bed, covered in puke. We went to her room, where there was some on her sheets, Dora blanket and on the floor, but mostly in the bowl I left next to her bed (that's my girl!). I quickly helped her change her PJs, then had her lay on the floor while I changed the sheets on her bed. I gave her some juice, took her temp (now up to 100.2°F) and a little dose of Tylenol. We kept her home from school today, although (THANKFULLY) there haven't been any other issues other than her cough and her feeling yucky.

Then this morning, I had the joy of taking Chase for his 1-year check-up at his Pediatrician's office. Let's just say something must've snapped with my normally complacent, happy little baby. This new 1-year-old "toddler" wanted NOTHING to do with the doctor's office. As soon as we went into the exam room, he busted out crying. Weight, length, O2 sat, temp, head circumference... it was like pure torture! And don't get me started on the doctor actually listening to his heart or checking his mouth or ears! All that topped off with two shots AND a finger stick to check his iron (I assume). My guy was NOT happy about all of this. Of course he crashed in the car on the short 8-minute drive home. He took a rather lengthy morning nap (can't blame him!) and now seems to be acting like his normal, wonderful self. If nothing else, this really scares me when I think of his cardiology appointment next Friday the 5th. We'll need to get four blood pressures, O2 sats, an EKG and an echo. I'm thinking it's not gonna be a picnic like it's been in the past. I'm starting now to get my arsenal of distractions ready for that appointment. It's a biggie and now I'm not just worried about the findings... I'm worried about being able to GET good pictures and accurate readings considering my boy is SO over doctors offices.

Ack!

Oh, and I also fed Chase a few bites of a PB&J while we were in the waiting room. I've been DYING to confirm his LACK of a peanut allergy, and am HAPPY to report he had no allergic response to peanut butter. WOOT!!!