Monday, July 19, 2010

6 Week Post-op appointment...

Today Jeff and I went down to PCMC for Gracelyn't 6 week post-op appt. Like always she had x-rays, an EKG and was monitored on and off of oxygen.

This was Gracelyn as we walked into the exam room...and this is Gracelyn as we were walking out...
Notice anything missing? (Well has left it's mark through a little while mustache and white lines going up her cheeks. :) )

I don't think any words can express exactly how happy I am right now. I don't think even Jeff can understand just what this means to me. We managed to do just fine with her oxygen, but after having it nearly her whole life, it is so nice to be without it. It still doesn't seem real. I'm SO, SO GRATEFUL!

Her x-rays looked great and her EKG was great as well. When they checked her O2 saturation, with the oxygen on, she was at 95%. I knew this meant she was pretty high on room air. We removed the oxygen and she was at 91%. I couldn't believe she was in the 90's on her own. It took all I had not to cry when I saw that big 91 pop up. Amazing!

We talked with our cardiologist about the surgeon mentioning to us that Gracelyn would have to have the Fontan. We talked about how it happened and that it was the wrong way for us to find out. She was so apologetic. It was her fault. They discussed it in their meeting (all doctors and surgeons) the Wednesday before her surgery and she was going to call and talk to us on Thursday. She never did. (She is 9 months pregnant and we were literally one of her lasts appointments before going on maternity leave. Just having been pregnant I can understand the whole focusing thing (not that it was blamed on that, but I understood). It made me a little less upset with the surgeon. Not that I don't think he walks on water anyway. How could I be upset with the man responsible for keeping my daughter alive? As for the over sewn artery, this was decided because it looks like she is going to need the Fontan. It was easier to do it now than later. It CAN, however,be reversed. Her RV still has what little flow was passing through, it is just not allowing anything to leave. The backward flow and leaking through the Tricuspid valve still could provide enough flow to allow the RV to grow. Prayers please!

Long story short, it was a great appointment. She is off of her lasix. Next appointment they will try and take her off of her propranolol. We go back in 3 months. Oxygen is off for now. Her cardiologist said with the Glenn we could see it on and off until next surgery...nah, I doubt it will happen unless she gets sick. For now we will go on acting like we are "normal". Nobody will know anything is wrong with her broken little heart.

I finally feel it is okay to exhale...for now.

Sunday, July 18, 2010

7 Months Old...

Gracelyn turned 7 months old this week. She is finally coming alive. We have a whole different baby. I think that she is finally beginning to feel well. She laughs for no reason. She squeals. She is just SO happy. She still doesn't feel like sleep is something she or I need. I am hoping that once we lose the oxygen (Monday hopefully!) she will begin to sleep. I think it keeps her up a lot. She is starting to sit up, but gets excited and falls over. As far as her health, I don't feel like things could be better considering what is wrong with her and what she has been through. She is one tough little girl! She is an example of strength to all who are around her. We love having her around and couldn't imagine life without her.

At 7 months old Gracelyn:
-Says "eye"...Hi and "ama"...Mama
-She waves and says Hi
-She gives great kisses on the cheek
-Has beautiful pink lips!
-Eyes have turned blue
-Can sit up
-Can still be put to sleep by swaddling her and putting a binki in her mouth
-LOVES to be outside
-Is still wearing her 0-3 month clothes (starting to move to 3-6 months on shirts)
-Loves to be sung to by her brother
-Is still a mama's girl, but starting to let others hold her...but only for a minute
-Loves bananas
-Doesn't think sleep is necessary
-Sats in the high 80's
-Is on .25 liters of Oxygen
-Is on .83ml Propranolol 3 times a day
-Is on .6ml Lasix
-takes 1/2 a baby asprin daily