How blessed we are

Today has been a perfectly wonderful day. It has given T the the confidence to go home and to be able to face all the trials in her way. Tomorrow it looks like we get to go home! Which will be a whole new ball game :)!

more steps forward...

Yes that's right folks...

she walked out of her room to the forever young zone (a play/art center within primary's).

It was a very special hour and a half. She drew, painted wood blocks, played play dough, was able to play with Myles and Sky, PLAYED HER PIANO RECITAL PIECE! And simply forgot about some of this for a moment!!! She even managed to force a smile for the picture.

Through out this surgery process I've talked a lot about my feelings, T's feelings, and a lil about dad's feelings. I have to say that our other 2 kids have been amazing through the whole process. Skyler has only had a hard time the very first time she saw her and I know that Heavenly Father has blessed her to visit during the "best" times we have had here. It simply is not by accident. They are very close and very best friends. Myles who is 2 has also been amazing. I've been told he has behaved while with family. And he has brought his contagious smile to the hospital every visit. Taylor lights up the most when she sees him. When he showed up today, we were at the forever young zone. He ran to T and gave a hug she instantly stood up and asked him if he wanted to play. I know for at least a second she forgot about the hard times and about the pain.

 At this exact moment the surgeon dr kaza came in and asked if she wanted to stay or go home. She said she wanted to say. The nausea is back and she is feeling crummy again... I will continue to force her to eat and take her meds as much as possible.

What a difference 10 hours can make!

Well I am happy to say we now have things under control! Taylor is now comfortable and NOT NAUSEATED finally yes! We have discovered that the real pills are the best form of medicine for her, they crush them up and give it to her in ice cream. This has also lessened her anxiety about taking the meds then puking. She is actually eating breakfast right now, froot loops and mandarin oranges!!! So I'm a little nervous to post because we have had great moments like this before then she spiraled down hill. But I think we are out of the clear with the nausea. All it is going to take is a great day and a bowel movement to go home! She has been begging. Truthfully I only want to go home if it is the right choice. She even smiled this morning and is up walking out of bed!!!

These pics are from yesterday she looks even better today!

we have made it through day 3

This evening T was feeling the now common nausea. Man if we could just get rid of it! I know I'll take it for her... I would in a heart beat if I could. After much persuasion she finally took her 4 oral tylenol (i'm not going to mention who but I'm pretty sure I heard the words DISNEY LAND? the worst part is she was way to miserable to get excited or even acknowledge it :( !)  Then we had to have her take another medication orally, up until this point it has been through her iv but we are trying to move forward. Well she FINALLY took the lasiks (I have no idea how it's spelled and frankly I don't have the energy to look it up) and then she barfed everywhere. Meaning that all the hard work it took to get her to take all the meds was a waste. Then the smell of the throw up in her hair made her sick. Sooooo good news she now has clean pretty hair! But even the clean baby smell of johnsons and johnsons is making her sick. I took a pic and she hated it! So I promised I would not take any more pics until she approves. What a mean mom I am! She feels like garbage and I'm snaping pics, just trying to document for us and the many people who want to visit but can't.

The poor girl cried and cried. She has told me repeatably that she wants to go home and that she just wants it all to be over. So heart wrenching as a mom!

The good news of the night is that our nurse diana has been amazing, I will be sad to see her leave at shift change. I told her how valium helped us (meaning T, but sure I might take some given the right moment)  last night and she agreed that it may help. So valium it was, followed my a much less fought dose of pain meds. And a quarter cracker and 4 sips of sprite! hey you have to start somewhere and right now I can say it is calm and peaceful at least for the minute! Yep i think Valium is my new BFF!

I do have a few pics of T left to post but I'll have to do it another time! I am going to obey her wishes and stop taking pics until she feels good enough to approve! See I'm not that rude right?

Todays update

I am struggling to come up with a post for today.

Today has gone fine. Taylor continues to improve but it is so painful to watch her struggle.

Her disposition has completely changed. She is miserable and scared. She refused oxygen. She has refused to take medications. Which I can not blame her for apparently the liquid loratab tastes like chewing on pennies YUCK! The greatest struggle has been nausea. She has been dry heaving with minimal throw up all day long. She has had very little rest. It is a big kitchen sink of problems contributing to her upset stomach.

1 pain killers

2 she has hardly eaten since we arrived on monday (a couple or crackers and bites of a doughnut)

3 anxiety (of course!!! can you blame her? she feels as if this will never be over)

4 the anesthesia may still be wearing off?

We met with the pain team and they helped figure out better pain management solutions. So hopefully tomorrow will be smoother?

She also had her pace maker wires removed this morning. This is another good sign. But unfortunately it was painful and scary.

We did take her on a wheel chair ride through out the floor, which was her idea. But all the "awful" smells of the hospital upset her. She is for sure my daughter when I am prego I can not handle any smells good or bad.

I did hear some rumors from friend that there was talk of taylor coming home today. For now we are at the hospital. We have heard nothing of her coming home. And frankly this is where she belongs, I could not imagine taking her home today! The 6 weeks of post hospital recovery are going to be all I can handle! We are taking it day by day. If she does have 1 or 2 good days then the possibility of going home will be closer.



The majority of my posts have been about T and myself. But so many people have been amazing through this all. First off Bryson is one amazing man. I knew this when I married him, I knew he was the man of my dreams when I married him. During this time he has been my #1 support. He is a rock, a stubborn right rock! He has forced me to eat which is difficult for me during times of stress. He stayed the night last night and the whole day today. I tried to get him to leave and take a break but he stayed to help. He is the greatest Dad and Husband, and my very best friend.

Also a big thanks to my mom and Melissa who have both made it possible for us to spend every possible moment by T's side. One of her biggest fears is to be without us during this experience.

And to all the friends who have helped in one way or another. I have sent friends on the most random errands that I know were difficult. And last thank you for all the love, thoughts and prayers! They have meant the world. And I know they have made a difference.

 I must thank my heavenly father for watching over us and helping us through this. I know that he knows us and is helping us every step. How blessed we are!!!

K this is really last, times like these always help me reflect on how important the "REAL" things are. Family friends faith are the greatest blessings in this life. So tonight make sure you hug your loved ones extra tight for me!

roller coaster... we all need to be prepared for a very long ride! 

Today has been a day of great highs and lows...

 Early this morning about 6am things were ok. Taylor had rested the night and I could see improvement. The second she awoke she acknowledged me then asked for Dad! I told her that he was helping sky get ready for school and getting Myles ready to come to the hospital. She then told me she was soaking wet, which was true. So I helped the nurse redress her bed. We had to turn her to the left side, which was extremely painful for her, then repeat with the other side. When we were finished she began crying hard, I did my best to comfort her. Once the morphine kicked in she was ok and out cold. In the ICU parents are not allowed from 7-8 am and 7-8 pm. So I then went and got ready for the day and even managed to eat a lil cream of wheat (last surgery I was unable to eat.) When I returned to T's room I found the nurse pulling out IVs and lines and wires. This was a good sign, very exciting in her progress. But she was again in so much pain she started crying so hard that the nurse had me no longer close to her. Today for the first time I think she is trying extra hard to be brave for the nurses and Dr's. So when something hurts or goes wrong she completely breaks down to me, sweet girl.

Then the nurse Kim told T that she had to sit up. So she did it! It was hard, it was painful, and it was exhausting. she cried to me and I had to have Kim sit by her to calm her down. But she did it. This was big for her lungs, and also to help verify her chest drainage tubes were almost empty. She sat up in the chair for 40 minutes!

 Once the verified the drainage to be minimal the next step was to remove the drainage tubes. Which was her last step before she could leave the ICU. There were 2 drainage tubes, the first cam out painful but well. But the second bugger was awful it wouldn't pull out so it tugged and tugged then splattered blood everywhere. IT WAS CRAZY PAINFUL, I could just tell. But that was the last step to going to the main floor. So we are out of the ICU, which means we are we are moving along.

At this point she did do amazing. She walked relatively well. She was dizzy and felt weak. But it was one more step in the right direction.

 So I was going to brag about what she ate. But... this has turned to be a brutal step. DANG YOU NAUSEA you are officially my nemesis.

Long story short she is still struggling. This is going to be an up hill battle the whole way. Or a roller coaster, ups downs highs and lows. Right now I am exhausted so I can only imagine how exhausted sweet T is:(.

Today has overall been a good day. Everything is going good as far as her recovery. Poor Taylor is in the most pain I have seen her in :(. She is still being a trooper but the nausea has continued. I think her stomach is finally starting to come around in the last hour or two. She has had many tears today and has not felt good.  The good news is we are moving out of the ICU in 12 minutes. I will post more when and if I get a chance. I will hopefully know when we are ready for visitors.

one great indescribable wonderful day...

Today went amazingly well. Every single fear and concern has vanished. That being said of course we are not out of the woods but today was a day of miracles for Taylor! I must express how overwhelmingly blessed I/we feel. I know every prayer was answered, so THANK YOU SO VERY MUCH! Words are simply not enough. I know that God is aware of us and our family and most importantly TAYLOR!

The surgery went great. Dr. Kaza did insert an adult size cow valve into T's right pulmonary artery. He did not however have to widen her left pulmonary artery. His exact words were "you could drive a semi through it!" The previous scar tissue offered no problems. The Dr said as soon as he finished he could all ready see the enlarged/overcompensating right ventricle of her heart shrink down and start to function properly ! Can you say BLESSING!!! Anesthesia was great and her pain is controlled. Her ventilator was removed in the operation room which is just one more great step. T has a morphine drip which she can press when she is in pain. She is 100% controlling her own pain and has never reported it over a 3! 1-10 scale, 1 being no pain and 10 being the most pain ever. She is uncomfortable, of course. The biggest problems have been dry mouth followed by a little liquid which in turn has ended up in vomit.This is a problem we will take! She truly has blown everyone away by her health and also her positive attitude and outlook. She is one amazing girl who has taught me so much more then I could ever treat her!

Taylor has been blowing the Dr's away by her recovery, so we will just play it day by day. She will have roughly 6 weeks recovery at home before she is back to wrestling with Sky and Myles. Tonight I am at the hospital with her. this go round is so different from the last for us. She is afraid to be left alone so Bryson and I are doing our best to be by her side. Skyler had a hard time seeing her sister for the first time and broke down into tears. I expected this to be the case. Her second time in she tried to kiss T on the lips but couldn't reach so she kissed her hand then pressed onto T's lips! Myles asked "What's that? What's that? What's that?" to every single tube, wire, instrument, computer... you get the point!

She was not able to sleep much today. Even after her only 30 minute nap I saw improvement in the eyes and face and cognitive. We will see how tomorrow goes and once she is out of the ICU we would be happy to have visitors.K I better go to sleep so I can be the mom T needs in the morning.

Heart Surgery Update

This is Summer's sister Starr:

The surgery went as good as possible. We are very excited about the outcome.

Many prayers have been answered!  Taylor had a very successful surgery.  She got to choose bubble gum anesthesia.  They used a cow valve that will carry Taylor hopefully into her thirties.  This is such great news for us!  The surgeon, Dr. Kaza, stopped by and commented on how remarkable Taylor is doing post surgery.  She is already speaking, coherent, and aware of what's going on around her.  They've estimated her time in the ICU will be four to five days and then she'll be recovering another four to five days in another area of the hospital.  We are all so very proud of Taylor!  She has been so brave and strong throughout this process.  She loves the orange slushies and ice chips in the hospital.  Way to go Taylor!!!  The key now is that she gets enough rest for a successful recovery.  We appreciate every one's thoughts and prayers so much!  We will keep you posted on when we can have visitors...at this time Tay needs as much rest as possible.  Thanks for all the love and support!

Favorite Taylor moments:
-Bryson turned to Taylor and let her know that she's so lucky that her doctor went to Harvard and attended the best medical school possible.  Taylor's response "I thought Yale was the best."
-After Taylor's surgery she when she found out they used the cow valved she jokingly moooooooooooed!
-Myles favorite part is her mustache (the oxygen breathing tubes)

THE BIG DAY...

This morning Taylor was unbelievably positive and brave. We played as much as possible before we sent her with the into surgery. In the waiting room Bryson played Black Eyed Peas, I got a Feelin' and they grooved. Then in the presurgery room we met with the surgeon Dr. Kaza. That was our first time meeting him, he is awesome and provided us with great information and reassurance of his skills and expertise. He informed us that the pulmonary valve replacement will either be a pig valve or a cow valve? He will have both available as options. He will give her an adult valve which should last through her child bearing years (30 plus years, incredible!) Taylor provided a good laugh as to if she would snort like a pig or moo like a cow when it was done. Dr. kaza also informed us he will be enlarging her left artery, which was news to us. But that being said he is the expert and we are completely putting our faith and trust in his hands. He also reassured us that the incision will be  in the exact same place as her scar and that the chest drainage tubes will be in the exact same spot also. It's just nice that the dr has the sense of making it less intrusive and mindful of her appearance. Which truly doesn't matter but just shows me that he cares. The majority of the time he met with us he peered right into my eyes. Smart man he knows a mothers heart is quite fragile, he provided us with great comfort. The estimated surgery time is 5 hours then 1 more hour until we get to see her in the ICU. We then met with 1 more dr and a nurse. The nurse explained the pain levels to T. Level 1 through 10, 1 being no pain 10 being the worst pain possible. Once the nurse left the room T asked, "Mom what does she mean pain?" It was a little heart wrenching, it was like she had not actually thought about the pain after the surgery only during the surgery. We have informed her as much as is appropriate with out completely freaking her out. It is a fine line and we have kept it as positive as possible. Then the anesthesiologist came into the room to meet with us, he explained the risks. He offered her anti anxiety medicine but T said she was ok. She also picked bubble gum as her flavor for her sleeping gas. Then we were off to send her to the operating room. Bryson being the amazing dad he is gave her a piggy back ride. We hit the parent stopping point and she was scared. She did not even want to look into our eyes :(. I gave her a huge hug and kiss and told her I could not wait to see her after the surgery. I told her she was strong and amazing. I told her I love her more then anything. And I told her that I was excited for her heart to be all better. Then Bryson told her he loved her and told her we would be there when she woke up. Then the anesthesiologist bent down and  she hoped onto his back for a second piggy back ride. That was the last time we saw her. Tears filled my eyes as we left her, but I didn't break down. I have absolute faith that she will be my amazing fun happy silly genius Tay soon. The incision started at 9 am. And now we wait. I will do my best to keep updates coming as we get them and have a chance.

Primary Childrens soon to be our home away from home

 Yesterday Taylor had two separate visits to Primary Children's Medical Center. First Taylor and I went to the Riverton Campus (our first time there), where she had an ultrasound done on her legs. Basically they were checking for good circulation, blood clots, and a good place to input the heart lung bypass machine during her surgery. This was a HUGE problem last time, so I am happy that they are taking every measure possible to ensure a great surgery.

It was so funny the Dr's were so excited to see T's veins. They kept saying "You take great pictures!", "Your veins and arteries are amazing!", "I wish everybody looked as good as you do!!!" It was so funny even the residents came in :)! From my many experiences with T there are only 3 times when many Dr's/nurses/residents congregate around a child. Either something looks remarkably good, or something looks very bad, or there is something they can't explain (Taylor!)

Then the whole fam damily headed to Primary Children's Hospital in SLC. We went to a presurgery class where they showed a video, let the kids touch and feel all sorts of equipment used in surgery and throughout their stay. There were all sorts of other kids who would be having surgery. They passed out medical buddies where they could practice using the equipment. Then we went on a tour of the hospital, operating rooms. recovery rooms. ICU...

It was a good experience and I'm sure it prepared all the kids a little as to what is to come. Skyler even came home today saying she wants to be a nurse! So if all goes according to the girls plan Taylor will be a Cardiologist and Skyler will be a nurse!

I know Taylor is going to do great. She is an amazing girl full of faith and hope. She is also a fighter a survivor and a perfectionist. So bring it on she can come out stronger, healthier, and faster in the end!!!

Crazy hair day

Taylor won craziest hair for a girl in her class! shocker!

Skyler came home from school today with a new career path...

When I grew up I want to be a nerce (nurse.) Becoause I went to the hosptil yesturday. Becoaus my sister has a hart (heart) problom. I saw all of the cool things nerces use, I wanted to learn more.

1 week till surg... hope it flys by I can not wait any longer!

Tomorrow officially is 7 days until Taylor's 2nd open heart surgery. I am, in a very strange way anxiously awaiting the day to come. I feel like it is such a huge weight on my mind. It has encompassed my every thought for the last week. Funny tears have been on the very edge of my heart, not out of fear but out of understanding. Taylor is so incredibly healthy that had Dr's not told us we would have never know that it's time for surgery. Her life has in no way been crippled or even restricted by her disease. She is normal, even more then normal she is incredible. And I realize how blessed we are to have so many normal kid experiences in her life. I know we have been blessed by Heavenly father, I know he knows us and is 100% aware of us.

 The first go round was BRUTAL! That's putting it lightly. So knowing what i now know I'm nervous. But that being said I am 100% confident that we are being watched over. I know that Taylor has a very important role on this earth, I learned it when I pleaded with God to let me know if T was going to stay with us or return to him after the first surgery. I know that we are in the best hands possible, and I am completely trusting in their ability and expertise. I look forward to the day we return home from Primary's and she gets to sleep in her own bed. And I look forward to her first bike race and soccer game back where she is faster then ever, she is all ready pretty darn fast.

I have to share my feelings about the endless love and support we have received. Today I had countless friends offer support, prayers, and help. Taylor was so excited to share a story of a friend asking for her to have a safe surgery in prayer. We feel so loved!!!

This week Taylor has an ultra sound to check the circulation in her legs. We will go to a pre surgery meeting and a tour of the hospital as a family. Then on Sunday Taylor will have a history and physical, blood work, and a chest x-ray. And finally Monday morning we go in for surgery. I know I have said it before but we'll take all the prayers we can get!!!