lizzywednesday
07-14-2010, 09:47 PM
UPDATE:
Well, DD's cardiology follow-up was this past Tuesday (7/27) and the news is still the same. (Of course, she's measured 24" long and weighs 13lbs 12oz, so she's still doing well otherwise. Oh, and she learned how to roll over and is working really hard on sitting up.)
HOWEVER, her cardiologist was very encouraged by the pictures from the echo because it looked like her heart was handling the pressures OK. Of course, she'd just nursed and was napping during this latest echo, but she's been calm for the last two, so I think it's a fair comparison. (I'll have to remember for next time that she should nurse BEFORE they call her for her echo to encourage sleepiness. She hates the gel!!!)
This doesn't mean her stenosis has resolved itself or that she won't need another procedure. She still has the stenosis and she still needs another cath.
We now have a rough timeline for when her next cath will happen. The cardiologist thinks it should take place around 3 months from now, but we'll have a more definite timeline after her next appointment in September.
So, my rainbow is still working its mojo ... and so are all of your thoughts & prayers. Thank you for your continued concern for my family and me!
================================================== ========
No, this isn't another b!tch about my DH. We worked that out after my last BP posting that he lurked out.
This is about DD and her continuing cardiac issues. *sigh*
Background about DD's condition & my prenatal anxiety about it is in this thread: http://www.windsorpeak.com/vbulletin/showthread.php?t=343540&highlight=nicu
For the record, we received TOP NOTCH care at CHoP and though our nearly 2 weeks there (I was admitted/induced on 3/8, delivered DD by C-section on 3/9, DD was discharged on 3/19) were sucky because of the situation, the staff made it suck less.
Anyhow ... DD had her June follow up with cardiology a couple of weeks ago.
The good news is my EBF baby is growing & gaining weight, up from a "discharge weight" of 7lbs 12oz to 12lbs 5oz and now around 25" from 19.75". Her BP is fine, color is good and O2 level is within normal ranges.
The less than great news is ... her stenosis wasn't solved by the original cath that they did when she was 12 hours old. (Yes. 12 HOURS old.)
They want to repeat the balloon valvuloplasty at some point soon. We just don't know when.
I think we will know more after her next follow up, so I am trying not to stress, but the fact is she will still need another cath procedure and will still need to go to the hospital for it.
We were taken off guard by the news because we were under the impression that DD was improving. It also didn't help that I watched the movie Something the Lord Made the day after her follow up; her condition is named in the movie but the treatment was actually for a different condition. (IMDB: http://www.imdb.com/title/tt0386792/)
Truthfully, the saving grace is that her risks decrease as she grows bigger, so her stay will be more like an overnight than another 10-day stay like we had when she was born, so I guess it's not *that* bad, but I am still frazzled by the idea. I didn't plan for a second stay!!!
Well, DD's cardiology follow-up was this past Tuesday (7/27) and the news is still the same. (Of course, she's measured 24" long and weighs 13lbs 12oz, so she's still doing well otherwise. Oh, and she learned how to roll over and is working really hard on sitting up.)
HOWEVER, her cardiologist was very encouraged by the pictures from the echo because it looked like her heart was handling the pressures OK. Of course, she'd just nursed and was napping during this latest echo, but she's been calm for the last two, so I think it's a fair comparison. (I'll have to remember for next time that she should nurse BEFORE they call her for her echo to encourage sleepiness. She hates the gel!!!)
This doesn't mean her stenosis has resolved itself or that she won't need another procedure. She still has the stenosis and she still needs another cath.
We now have a rough timeline for when her next cath will happen. The cardiologist thinks it should take place around 3 months from now, but we'll have a more definite timeline after her next appointment in September.
So, my rainbow is still working its mojo ... and so are all of your thoughts & prayers. Thank you for your continued concern for my family and me!
================================================== ========
No, this isn't another b!tch about my DH. We worked that out after my last BP posting that he lurked out.
This is about DD and her continuing cardiac issues. *sigh*
Background about DD's condition & my prenatal anxiety about it is in this thread: http://www.windsorpeak.com/vbulletin/showthread.php?t=343540&highlight=nicu
For the record, we received TOP NOTCH care at CHoP and though our nearly 2 weeks there (I was admitted/induced on 3/8, delivered DD by C-section on 3/9, DD was discharged on 3/19) were sucky because of the situation, the staff made it suck less.
Anyhow ... DD had her June follow up with cardiology a couple of weeks ago.
The good news is my EBF baby is growing & gaining weight, up from a "discharge weight" of 7lbs 12oz to 12lbs 5oz and now around 25" from 19.75". Her BP is fine, color is good and O2 level is within normal ranges.
The less than great news is ... her stenosis wasn't solved by the original cath that they did when she was 12 hours old. (Yes. 12 HOURS old.)
They want to repeat the balloon valvuloplasty at some point soon. We just don't know when.
I think we will know more after her next follow up, so I am trying not to stress, but the fact is she will still need another cath procedure and will still need to go to the hospital for it.
We were taken off guard by the news because we were under the impression that DD was improving. It also didn't help that I watched the movie Something the Lord Made the day after her follow up; her condition is named in the movie but the treatment was actually for a different condition. (IMDB: http://www.imdb.com/title/tt0386792/)
Truthfully, the saving grace is that her risks decrease as she grows bigger, so her stay will be more like an overnight than another 10-day stay like we had when she was born, so I guess it's not *that* bad, but I am still frazzled by the idea. I didn't plan for a second stay!!!