Thursday, January 26, 2012

Getting Ready for #3

Spring.

Within the next 6 months.

Oh boy.  Here we go.

Yesterday C had her appointment with the interventional cardiologist, the doctor who does her heart caths.  We knew this day was coming but knowing the day is coming sure does nothing to lessen the dread I feel in hearing the words, we are ready to schedule C for her next procedures.

Ok, how about I am not ready.  I am so not ready to turn her over again to the surgeon and have her (hopefully for a long while) 3rd OHS.

But, she is ready and that is what is important.

1) She is big enough - C now weighs in at a whopping 27 pounds, and if you think I am overly proud of that, well, I am.  She still vomits at least once a day, even though we do have days where she will not vomit at all.  And she still does not eat or drink anything by mouth. So for her to be this big and have this kind of weight on a strict, tightly balanced g-tube diet is awesome. 

2) She is strong enough - Her stamina is thoroughly shocking to everyone.  She rarely takes a nap and generally runs, jumps, climbs, chases her brothers, rolls all over and twirls in circles ALL day.  She does not do the more typical wheezing or catching of breath that other heart babies do and although she is semi-permanent blue right now (lower oxygen sats and all) she does not become more blue when she is doing all of the aforementioned.

3) Her heart is strong enough - C's echo yesterday showed her heart is functioning so well right now.  She has a super strong right pumping ventricle, her function is awesome, there is little to no regurgitation in her valves, her tricuspid valve looks great, her RA and PA's are wide open,  her Glenn is wide open and best of all her pulmonary veins (her 2 previous surgeries addressed repairing these) are wide open.  Her lungs are strong and her heart is just functioning at the best it can.

4) Her arrhythmia is in check - Although she is still on one medication for the arrhythmia she has not shown any break through problems.

5) She is healthy - Outside of some nagging cold/virus issues with her runny nose, which could be numerous other things as well, including allergies and teething, C is healthy.  Her body is doing everything it is supposed to be doing.  She is still a little behind in development but considering how her heart functions and everything she has been through she is really not that behind on development.  If you did not know she had issues you would not be able to really tell she was any different from any other 2 year old. 

Of course we are scared and terrified and nervous and all those other horrible adjectives.  She is so awesome right now we do not want to do anything to possibly lose pieces of C or lose C altogether.  After speaking with the cardiologist, which can I just say, he is so awesome, we are planning on scheduling C for her next heart cath and then 3rd OHS (the Fontan) sometime in April or May.  We will be looking for after flu season but before July as we do not want to push this too far into the summer.

4 comments:

Keysgal@QuietWater said...

It is super scary and I am right there with you and Kevin with those feelings. One of the worst things I think I ever have to endure is the fear of the unknown and I am praying that we will get through all of this and realize the dread was much worse than the outcome. C is an amazing little girl who has far exceeded the expectations of her doctors. One reason she is so strong and is doing so well is the care she is receiving from her mama and daddy and the love from all her family. One other reason is all the prayers that are lifted for her from so many. She is such an example of determination and of the human spirit. One special little girl who is much loved.

Keysgal@QuietWater said...

It is super scary and I am right there with you and Kevin with those feelings. One of the worst things I think I ever have to endure is the fear of the unknown and I am praying that we will get through all of this and realize the dread was much worse than the outcome. C is an amazing little girl who has far exceeded the expectations of her doctors. One reason she is so strong and is doing so well is the care she is receiving from her mama and daddy and the love from all her family. One other reason is all the prayers that are lifted for her from so many. She is such an example of determination and of the human spirit. One special little girl who is much loved.

Jen said...

Great to hear that Carolena is doing so well with weight gain and that she is such a good Fontan candidate! Best wishes to you guys that all goes smoothly.

Laura McCann said...

Brings tears to my eyes to even read this. The fear is there, but so is lots of pride and pleasure hearing how good her stats are. She is an amazing little angel. She has the best caretakers in the world and you are all still my heroes. My prayers are with you all. Love, hugs, and kisses to everyone. Auntie Lala