Today, was Alexa's cardiology visit. It went kind of like I expected and part of me was dreading.
People always ask me, 'How is Alexa doing?' And well, the answer is that she is doing great but needs open heart surgery.
She is doing very well, growing, gaining weight, oxygen still in the mid to high 70's which is acceptable but not ideal. Especially for a flourishing toddler that wants to explore and is eager to learn about the world around her. The BT Shunt Alexa received at 13 days of age is getting too small for her but it has lasted her longer than we expected. We went all of 2009 with no surgeries or hospitalizations or really any grave illnesses for that matter. I am very thankful for that. And I knew all along that surgery would be here sooner than later. Sometimes it was the big elephant in the room other days it was a mouse yet it was always present in my life. I look forward to the surgery so we can put it behind us.
So per her cardiologist recommendation we are looking at a heart catheter and echo in the next couple of weeks and surgery shortly after. I have no dates for either as of yet. Honestly it feels like I am numb to this all as I type. But my stomach is nauseous ~ nervous. As the days get closer I'm sure things will sink in. But yes, I already cried today. A micro mini break down as I tried to sleep Alexa for a nap. Her smile, however made me quickly dry my tears.
After the heart catheter it will probably a couple of weeks so we can meet with the surgeon and then depending on his schedule it could be another couple of weeks for surgery. This might put us in mid February. The doctor knows part of me wants to push things off {till like forever} but he said we already waited for her to pass the big growth curve babies have, the curve is now leveling off so she will be able tor receive a larger conduit now and from now on she will begin to feel weaker and more tired as her little engine that wants to just go go go tires out. And not to mention with her low O2 levels she is more vulnerable to any respiratory viruses/bacteria. So as he put it there is really no good reason to wait any longer.
I will post more as I have more details.
I have to say, I don't know but I feel better this time around than before. Maybe more mentally prepared. Maybe naive although I don't think so. I feel like this whole year has helped me grow and mature and am more able to apply this counsel given by Jesus Christ:
"So, never be anxious about the next day, for the next day will have its own anxieties. Sufficient for each day is its own badness." Matthew 6:34
So, yes I am anxious, nervous, scared, what have you but I am trying not to be until the day I know it will be inevitable.
And so for now I enjoy this beautiful face, smile and gentle sweet spirit ~
She's getting so big and even more beautiful. I know it's rough facing surgery, but I cannot believe that she's made it with her BT shunt this long! It's a miracle. We have different feelings, I just wanted the surgery over with. I knew it was coming and just wanted it done. These kids are so resilient. You'll be amazed at how quickly they recover. Good luck. You'll all be in our prayers.
ReplyDeleteAlana & Kira
Alexa is such a beautiful young lady! I know it's hard to think about the upcoming surgery. The good thing is you know exactly what type of surgery is needed and you can prepare yourself. My DH and I didn't have that luxury when going for the surgery in December. The plans changed within 1 day from a procedure to the very rare OHS.
ReplyDeleteThe numbing feeling of helplessness is unavoidable. I'll tell you now - the worst feeling is when you have to hand you precious baby to the doctors right before the surgery. The most heart-piercing experience EVER!
As unbearable this experience is, you need to keep thinking this surgery is to make her a much healthier and happier little girl.
contact me anytime,
joanna
www.care4abi.com
Oh Michelle, my heart aches for you. This time, to me, is some of the most difficult ~ sort of a dreadful anticipation mixed with all the worries, and second guesses and fears. I'm so glad you have your faith to guide you and carry you through. It is wonderful how far Alexa has been able to get with her BT shunt and we'll be hoping and praying for the successful placement of a large conduit. I can't wait to see how your amazing little blossoms when her heart has a little more space to function as it should.
ReplyDeletePlease feel free to email me if you have any specific questions that I can help with. In the meantime, know that we're holding your whole family and Alexa's medical team in our heart, our thoughts, and our prayers.
Love,
Josie
Beauty indeed...remembering you as well! Thank you :0)
ReplyDeleteI like that 2nd paragraph!! I may use it sometimes. I get asked that question about my heart baby often. So glad I found your blogspot. I will lift you in prayer as well as your precious baby girl. Heart Hugs!!
ReplyDeleteMy blogspot is www.bedwellfamilyoffive.blogspot.com