In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more. But we made it through it all! Through everything Miss K has always been happy and smiling, nothing can get her down! She is our light, she brings so much happiness and love into our home.
So onto her Cardiology check up today :o). Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress. He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her. We are supposed to keep what is left just in case but she does not need to take it anymore. It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it. He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing. It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help. And NO BLOOD DRAW today (see Side Effects)!!! We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).
The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O. He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it." He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days. He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system. It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant. But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.
We have some great parties planned to celebrate Miss K's first birthday :o). She is going to feel quite spoiled. Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her. This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family. And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).
Just a little look back on how far we have come with Miss K:
|August 8, 2011. Just mere minutes after birth. Those purple little feet and hands make me so sad.|
|About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(.|
|Almost 24 hours old, still nice and pink and doing well :o).|
|6 days old and day 2 at home and doing great!|
|7 days old, hours after being admitted to PCMC.|
|One of the first days in PICU at PCMC.|
|Home? You mean this isn't home? And I get to see this place called "home" tonight?!?|
|Day 4 home from PCMC and nearly 1 month old.|
|2 months old.|
|Always smiling at 4 months|
|5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it.|
|7 months, her famous cheesy toothless grin.|
|8 months, one of my favorite smiles :o).|
|Our sweet 9 month old|
|Quite an energetic 10 month old|
|11 months, nearly 12 months. Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now.|