Wednesday, May 12, 2010

Yesterday's appointment

Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song.
The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah!
Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the aorta, work on the valve, and do the Fontan surgery.
Surgery is tentatively scheduled for next summer, about a year from now. It was weird to hear that they sat down and discussed her case and came up with a date, but great to hear that it isn't for another year!
Her weight was up over a kilo! About 3 pounds! We exchange progress eating orally for pounds gained, but it'll all work out in time..

Overall it was a good appointment. I am so grateful for the care she receives and the investment they have taken in her and her little heart. She is loved there and we so love them..

I talked for a minute to a 29 year old woman sitting in the waiting room. She had just had pacemaker wires put in over the weekend. She had had 4 open heart surgeries during her life and said she's going strong. She said 'your daughter has a much better chance than I did when I was born, and I'm doing great." I struggled not to cry and told her thank you. Sometimes in between appointments I want to forget that there are things going on inside Bela's heart that are terribly wrong, but appointments force me to face it all and bring all my fears right up to the surface. It's always overwhelming to me, and I was grateful for her encouragement.

14 comments:

The Simmons Family said...

Ah, that's great news!! I'm glad the regurge is getting a little better and hopefully they can put off ballooning the aorta for a while. Owen has the same narrowing and his pressures are totally different from the arms to the legs.

I know how easy it is to forget about their broken hearts between visits.. then we are so quickly reminded at each visit. I'm sorry Bela had a hard time going. :(

Owen has been eating really well orally, but never more than a couple hundred calories a day. I just take it as it comes and pray that one day... it'll all work itself out!

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Wendy said...

I was happy to hear that surgery isn't scheduled for another year! That's great! And, she gained 3 pounds... that's awesome. Way to go Bela!!!
I think about the things that you face everyday and I am amazed at you and your family. It brings tears to my eyes when I hear about your trips to the doctors and the things you have to endure, but I can't think of anyone better to help Bela through this. You are amazing and a constant example of love, patience, courage, and faith! I love and miss you!

emcghee said...

glad to hear the good news. sounds like it's doing pretty good!

mandy said...

Avery, I love your posts. I feel extremely lucky to have the chance to even know you and your sweet Bela. She is the cutest thing and I want to take her home with me every time I see her.

Matt and Jennae Porter said...

Go Bela go! Keep packing on the pounds, girl! Can't wait to see you all tomorrow!

kristen said...

I've been following Bela's story for quite some time and find it amazing. I was wondering what color paint you used in her room. I love the stripes and hate trying to find the perfect shade. If you wouldn't mind could you please e-mail me at:
rgibsonfamily@gmail.com

Thanks so much and wish you and your family all the best!

The Silly Nilly Family said...

Avery, I'm relieved some to know about that lady too! Great hope for the future! Keep getting better sweet little Bela. Love you.

Cason and Marie said...

That is such great news! That was so touching to read the part where you talked to the 29 year old woman. Bela is a precious girl! And oh so darling!

likeschocolate said...

That is fantastic news, and you are not alone because I think we all want to forget that there is something going on. I think it takes the stress of the situation off even for just a minute.

Second Sight said...
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Second Sight said...

I stumbled, across your blog not expecting much, when I decided to roam from my magazine and look around. Thank you, thank you thank you, for sharing your journey. Yours is exactly why I wanted to start my magazine. I would love for you to write an article for Second Sight, if your interested please let me know, You have a stunningly beautiful daughter and I will continue to read your blog, and keep your family in my thoughts. Blessed be, to all of you.

Devon
You can reach me @ Soulcracked@hotmail.com

Mimi said...

yay for the improvement. That is fantastic... go Bela!!

I don't know if this is encouraging or not, but I am a 29 year old woman (sniff sniff) who has had three heart surgeries- AND have had 4 kiddos. Maybe it's not encouraging in that you know how one of those kiddos turned out.. but I was told I wouldn't have ANY kids. So take that heart defect!! ;-)

Being a heart mom is WAY worse than being the patient- for sure!

Bela is just as darling as ever- so sweet!