While it is a huge relief to be on this side of the surgery, we still haven't let our guard down. It's not the "she's all fixed and now you can stop worrying" that we had hoped for. With two residual small holes between the right and left side of her heart, one leaky valve between the top and bottom of the left side of her heart, one right ventricle that is stiff in its contractions and 13 doses of medicine/day, we don't quite feel the safety of "all better" that we would have liked. Yesterday, we went back to Children's Hospital for a routine blood draw. They only needed a small amount of blood, but Speed Gracer's veins are tiny, and she doesn't give up the red stuff easily. After a hysterical fit of epic proportions, we called it quits, leaving the hospital without getting the bloodwork necessary to evaluate whether some of her meds could be discontinued. We aren't sure, as parents of the Newly Mended Heart, what is too much on the little ticker. Can she cry that hard and not drop in pulse ox? We don't know, because we no longer have the monitors to tell us she's ok, and we don't quite trust our instincts yet because we're still detoxing from Constantly Nervous Parent mode.
This isn't to say we don't have faith that there is a Divine plan at work here, that we don't trust in the intricate repair that Dr. Spray and his talented team provided, that we aren't optimists with many fun adventures planned for in Graceland...this is just to say that it's a little piece of tentativeness in a world of tenderness.
We look forward to our follow up visit on Tuesday where we'll get the inside look at her heart once again, and where we will be reassured that Grace's heart is healing well and though tiny, that she's not as fragile as we might think.
We look forward to our follow up visit on Tuesday where we'll get the inside look at her heart once again, and where we will be reassured that Grace's heart is healing well and though tiny, that she's not as fragile as we might think.
Jenni,
ReplyDeleteAlthough I understand what you are going through to a point, we were fortunate to not have additional issues with her heart besides the heart block.
I am praying very hard that the appointment goes well and that you receive the reassurance that you need to feel comfortable and know that she's one tough cookie.
Still thinking of you all daily.
XOXOXOXO
Heidi
We are praying for all of you, especially for Grace to heal rapidly. She certainly looks like she is thinking about something that she would like to do - like chasing butterflies. It won't be long before she will be running around. Looking forward to seeing all of you soon.
ReplyDeleteShe is such a beauty! Praying that the echo goes well next week. I hope the results bring you some due relief!
ReplyDeletePrecious Amazing Gracie Grace, you look so wonderful in your picture today. I think of you all of the time and have totally given up the television. I simply watch your blog. You have captured my heart forever.
ReplyDeleteJenni and Darren, how wonderful that you are getting little bits of "you" time. In the long run, that will help you to be all that you have been called to be to that doll baby of yours. I just want to hold and kiss her, too. That is without a doubt, the very best medicine that you are giving her.
As I write and pray, another old song comes to mind, "He didn't bring us this far to leave us. He didn't teach us to swim to let us drown . . ." Isn't that awesome that He above all holds our Precious Amazing Gracie Grace in the palm of His hand, never to leave her or us? Praying with love as the pieces of this puzzle continue to fall into place. Love to the three of you.
Hoping that your follow up visit bring good news and you can let go of a little more of that CNPM (constantly Nervous Parent Mode). Can Grace come out to play (visit) soon?
ReplyDeletepraying your appt brings good news. She is a beauty :)
ReplyDeleteyou can get a pulse ox prescription from the cardiologist. The oxygen company will bring it to your house. We have one and it's great. We only use it on occasion an the alarm is actually a pleasant noise compared to all the ones in the icu. She is adorable, good luck. Keeping up with meds is not easy at all.
ReplyDeleteBearing in mind how far you have come and what you have gone through I would say your instincts when it comes to Grace are probably spot on! You will always be able to tell so don't underestimate yourselves, nervous or not you are the subject matter experts ;)
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