Surgery Tomorrow

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 28th) 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

Happy Birthday Michaela!

Michaela truned 10 years old yesterday...she is getting so grown up! She was excited to get an MP3 player and cute new clothes. We love you Michaela!

Easter Photos

The Kingsford Kids

Taryn is walking...well sort of. I did some fun editing with this photo but yesterday she took four steps all by herself. She gets so excited that she looses her balance...too cute! She still has a junky cough but seems to be getting over her ear infection. Of course she's teething now and I'm hoping that's the source of the runny nose and restlessness at bed time. Her color is looking more blue this week so we are still praying that she will be well enough for surgery in a few weeks. Thanks for keeping Taryn in your thoughts and prayers.

Surgery Postponed

We went with our fingers crossed to our follow-up appointment with the pediatrician today hoping that Taryn would be well and cleared for surgery. Bad news...she is worse today than she was last week when he looked at her! At the time her ear was only a little pink with some clear fluid and now it’s bright red with cloudy, yellow (infection filled) fluid. So, that lovely antibiotic she has been on for 8 days hasn’t done anything but give her nasty diapers and a yeast infection (along w/ another Rx to clear it up)!! Unfortunately she will not be able to have surgery Monday. Any infection would go straight to her heart when they operate and could be fatal. We are now on a new and stronger antibiotic and praying that it does the trick. These heart kids have such low reserves that it’s really hard to keep them healthy, it’s like fighting a losing battle.
The soonest they can get her in for surgery at this point is April 28th. We are praying that her heart function doesn’t deteriorate too drastically in the next month while we work to get her healthy for this much needed surgery. We are really frustrated but have faith that this is for the best and that, for reasons we don’t fully understand right now, we need to wait a month for surgery. We really appreciate all the prayers offered for Tarn. Unfortunatly she continues to need them.

Surgery Date

Taryn had her sedated echo and other tests with cardiology last Thursday. Dr Saarel, the cardiologist, didn’t have the final results of the echo when she met with us after we were done in recovery but she thought the preliminary results looked good and that we could go another month or two before surgery. Unfortunately that’s not the case.

We got "the call" from the surgery department this afternoon. Dr Saarel also called to let me know the results - she just isn’t getting enough flow through her pulmonary artery and the VSD is also narrowing. They want to repair it before she gets worse and has to go on oxygen or her heart starts going into failure. They feel that her size makes her a good candidate for surgery as well. So, the verdict is to do surgery sooner rather than later. We are scheduled for March 31st and check in for pre-op on the 30th. Her case will be discussed in Cardiology Conference next week, where Dr Hawkins (her surgeon) and the team will finalize the plan for how to do the repair. Dr Saarel informed me that, if she makes it through surgery, she has a high risk for needing a pace maker once they close off the VSD, which is new information.
I mentioned that Taryn is currently sick - she came down with a cold on Sunday, thanks to Ainsley who loves to share everything - and I hoped she would be well by then. I was told to get her into the pediatrician TODAY and, if needed, get her on an antibiotic to help her get rid of the crud. One of her ears had fluid in it so the doctor is treating it as an ear infection and we should be snot free in a few days, thanks to a new Rx. She has to back on the 27th to be rechecked and "cleared" for surgery. We pray this will do the trick so that we don’t have to reschedule.

I know many of you reading this are wondering what you can do to help. I don’t really know yet as I’m still trying not to freak out that I only have 10 days to prepare! (Seriously, how am I going to get her scrapbook done by then?!) Thankfully the girls are off track from school so Ainsley and Bridget are going to Idaho Falls to have fun with their cousins (thanks Ryan & Tiff) and Michaela wanted to stay with Aunt Megan to help her with her girls. We'll figure Parker and the rest out as it comes. What we could really use are your positive thoughts and prayers for our family, Taryn and the doctors and nurses who will be caring for her. If you would like to fast in Taryn's behalf next Sunday the 30th, we would be so grateful!

Bridget's Birthday

Bridget celebrated her 7th birthday last week. She was so excited to get 3 Hannah Montana guitars - one to play, one filled with make up, and one's a purse!

We love you Bridget!

New Month, New Template, Not much else is new...

It's still winter, we still have snow, and we are still waiting for Spring to arrive.
A few things that are new...

Basketball season just finished and soccer season starts soon. (oh yea!)
Parker made the honor roll at school again this quarter!

At 21.5 lbs Taryn had outgrown the infant carrier so I had to break down and buy a car seat. We have built in car seats in the van and she is the first baby who has surpassed the 20 lb. mark before her first birthday, go figure! So I had to buy a big seat that would rear face. Hopefully we won't have any accidents in it so that we can sell it on Craig's list in two months. Taryn is speedily crawling all over the place and has become quite feisty lately. With her condition I'm glad she has a "fighting spirit" but I wish she wouldn't fight ME when it comes to eating, bed time, etc. She is just getting over an upper respiratory and ear infection and feeling much better. She has a Cardiology Appointment with a sedated echo, in addition to her other tests, on March 13th. She has started looking a little blue lately, especially when she cries and gets upset, so I'm anxious to see what the timeline for her next surgery is. I will post an update after her appointment.

Kenny and I recently completed a video for the CHD support group we are involved in - Intermountain Healing Hearts. It features Taryn and some of her "heart buddies". The quality isn't very good since the file had to be compressed to view on the website but you can view it by clicking on this link: http://www.intermountainhealinghearts.org/

Until there is more to post...
Michele