I tried to get this information posted all last week but there has just been so much to do and take care of. Sorry for waiting until the last minute...Taryn is healthy and has been cleared for her surgery, which will be tomorrow (April 28
th) at 7:30 am. We check in at 6:00 am and will meet with her surgeon, Dr Hawkins, at that time and he will give us the details on how he is planning to repair her unique Double Outlet Right Ventricle (
DORV) and Ventricle
Septal Defect (
VSD) . I just returned from getting her
pre-op stuff done and everything went well except that they weren't able to get a urine sample so I get to do that at home tonight, which should prove to be fun since we all know how skilled babies are at peeing on demand!
I have learned recently that some have received
inaccurate information concerning Taryn's and our current situation so I am going to take this opportunity to
answer some of the questions you either didn't know you had or don't dare ask me...
* The survival rate for Taryn's particular heart surgery is 70%. There is a 30% chance she won't make it. Her first surgery was 90%/10%.
* This is open heart surgery, which means they will stop her heart to work on it and she will be placed on heart & lung by-pass. Most
likely they will not close her chest after surgery due to swelling and so that if something goes wrong they will have quick access to her heart.
* Babies very rarely die during OH surgery because they are on by-pass. If they are unable to successfully get them off by-pass then they come out of surgery on life support. It's generally the first 24 to 48 hours following surgery that complications
arise they loose them. So,
unfortunately once we hear she has made it through
surgery we won't be able to have that "deep sigh of relief", just a shallow one.
* She will spend the first few days recovering in the
PICU (Pediatric Intensive Care Unit). I will be sleeping at my Aunt Grace and Uncle Jim's house, which is 5 minutes from
PCMC. (Thanks Grace & Jim!)
* We won't know until recovery whether or not Taryn will need a pacemaker. Once they close the
VSD (hole between the lower two chambers of the heart) there is a strong possibility that her heart will not be able to "keep pace" on it's own. She will have an external pacemaker place post surgery and we won't know how her heart is going to do until they remove it. If she does need a pacemaker they will wait until she recovers from OH surgery before they put it in (most likely in her stomach).
* We just
don't know how long she will be in the hospital. It all depends on how recovery goes. I'll let you know what Dr. Hawkins thinks. I'm planning on three weeks and hoping for less.
* The rest of the kids will be well cared for this week. Kim Welling, my sister-in-law, arrived yesterday and will be running the house and kids for the week. Kara Welling, another sis-in-law, is coming to relieve her on Friday. (Thanks Kim & Kara!)
* Taryn is healthier than she has been in 8 weeks and is now walking all over the place. She's got a fighting spirit and a little "spit fire" if she doesn't get her way.
* I AM OK. I did have to switch to water-proof mascara this week but I'm not a "basket case" by any means. As a
distraction I attempted to do a weeks worth of Spring cleaning in two days, something I don't recommend. I went a bit overboard but kept thinking that every closet, base board and corner needed to be clean just in case things don't go well and someone tries to clean my house for me or looks in a closet...If you have
OCD tendencies like I do you get where I'm going with this! I am not looking forward to tomorrow and the days ahead but know that Taryn needs this surgery if she is going to live a long, happy life, which is what I want more than anything for her! I'm praying that I will have strength to handle whatever the Lord has planned for Taryn and our family, no matter the outcome. I have faith that her heart can be repaired but struggle with the reality that other parents with faith greater than mine have lost their babies to odds that were better than ours.
I will post updates throughout the day tomorrow. I'm not sure how long surgery will be but expect it to be 6 to 8 hours, we'll get a better estimate in the morning. Kenny has the day off and will be with me. Thank you for all of the thoughts, prayers, fasting, and offers to help! We certainly couldn't do this alone and are grateful we don't have to!
Michele