Thursday's appointment

I'm a little behind in posting about Thursdays apt.. It was okay. Her echo didn't look as great as it has been since her surgery... darn. I got so used to hearing that her heart function was looking great that it stunk to hear they saw something that concerned them. Her valve is leaking more, it has always been mildly leaky, but it was moderately leaky during the echo. Her pulses were still great, but the echo's don't lie.. So they've increased her blood pressure medication in hopes that it will take care of the leaking. We have to go back in 9 days for another echo to check it. If it is still leaky, we have to do a cath. We weren't planning on a cath until she was like 2, so that was kinda dissapointing to hear. But it's not for sure yet.. we're hoping the meds take care of it for now and we can hold off on the cath. The last couple of days she has been a little sleepier than usual and not eating as good. Maybe it's just me being worried, but I have noticed a little of both those things. She did put on some good weight though.. finally 16 pounds!!

Comments

Anonymous said…
I'm sure that was a little disappointing to hear. we'll keep Bela in our prayers and hope that everything continues to go well with your little miracle.
February 3, 2009 at 9:43 AM
The Simmons Family said…
Ahhh... that stinks. Hopefully the meds will do their job and things will improve on their own. Cath's are so difficult at this age... it's torture making them lay there with their legs straight for so long and they just want you to hold them. (you can tell I'm still getting over our 2 weeks ago)

YEAH for 16lbs Bela!!
February 3, 2009 at 10:24 AM
emcghee said…
So. . . . we'll hope that the meds help for now. I know you don't want to be worried about that when your concentrating on getting ready for that G-tube.
February 3, 2009 at 12:14 PM
The Tams Family said…
Isn't it funny how we get so wrapped up in the day to day things (sats, feeding, congestions, germs, etc.) and sometimes forget to think about what got us here to begin with? I always just assume Addie's heart function is fine! Hoping the best for Bela...keep us posted!
February 3, 2009 at 12:24 PM
Heidi Ann said…
Hooray for the weight gain!! I'm sorry about your disappointment, I can imagine how your heart sunk and how your worry is heightened. How hard it must be to have to look into every little thing, like sleepiness, wondering if it's something important. Hang in there. I'm ALWAYS here when you need a chat!
February 3, 2009 at 3:46 PM
lundgrenville said…
Was wondering how you all were doing and hoped you would post soon.
Yay for the 16 lbs...! :)
We will continue to pray for that little sweetheart.
Hugs
February 4, 2009 at 9:53 AM
Doreen said…
Wow, she's getting so big! She looks like such a happy baby. :o) Hopefully the meds will help her heart.
February 5, 2009 at 7:22 AM
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