Saturday, November 3, 2012

Three months later...

It has been three months since Jillian's open heart surgery and I am still in awe at how well she has done. She was able to start Kindergarten on time and is doing great! Her teacher was a little nervous to have her in the class, but after we talked she told me that since I was so laid back and relaxed about Jillian she felt much more at ease. I told her Jillian is in a much better place after surgery then before and we have less to worry about, at least for a couple of years! We have her three month cardiology visit on Nov. 14th, hopefully all is good and we get the green light for yearly visits. For about six months or so I have noticed two large lumps in Jillian's groin area, I have taken her in a couple of times, but by the time we got to the Pediatricians office the lumps were gone. We had her 6 year well visit two weeks ago and I mentioned this to her Pediatrician (who we have not seen for this) and he was concerned, he said he was 95% certain she had bilateral hernias that would need to be surgically repaired! Really! are you kidding me! So off we went to see general surgery at Primary's. He was right, the surgeon said that this is a defect present since birth but sometimes it can take a few years for bowel or ovaries to become trapped. So, yes she will need to have another surgery this year. He said the longer we wait the more chance we have for "stuff" to get caught and cause major problems with her small bowel. She will have this done on December 10th, luckily this is usually a same day procedure and most kids tolerate it well. She will have a cardiac anesthesiologist which is good. At least we have met our out of pocket maximum so this will be covered 100% by our insurance, I am sure they are LOVING us this year! 

In other news, I got a part time job working from home. It has been an adjustment but I am liking it. I do quality assurance surveys for skilled nursing, rehab and assisted living facilities. Basically I call family members or patients of these center and do a quick interview about their experience. The best part is most of what I earn goes to our vacation fund, which means I get to plan more vacations!!!

Halloween has come and gone, winter is on its way! We are finally getting into a school routine, the twins go to morning kindergarten, which means they have to be on the bus at 7:36 am, yep that's right!!! It is hard but we are doing it. I use the couple of hours from 9-11am to work while Claire watches a movie, plays games, colors etc. so far it is working pretty good. 

In three weeks Jason and I will be going on a cruise!!! We won airline vouchers at the silent auction at the heart walk this year, due to this we got a killer deal on tickets to San Juan, Puerto Rico. We leave late Thanksgiving night, spend two days in San Juan then leave on our cruise from there. We will visit St Thomas, Barbados, St Lucia, St Kitts and St Martin. This is my DREAM cruise and I am soooo excited. I am grateful for wonderful parents, both mine and Jason's who will hold down the fort here while we are gone. I will do a complete report with pictures when we get back. 

Sunday, August 5, 2012

Pictures

Since I didn't have this blog for the first surgery I thought I would post some pictures




A couple weeks before first surgery-4months old

Waiting for surgery

Right after in the CICU

Lots of tubes and wires!

Getting ready to leave CICU

Up on the recovery floor

Home!

Pictures

Waiting for surgery

Right after in the CICU

Lots of tubes and wires

She doesn't want to wake up

Standing for the first time, 24hrs after

Up on the recovery floor, watching the Olympics

In the bath at home!

5 days post op.

As I sit here watching Jillian color with her brother and sister I can't believe she had open heart surgery 6 days ago. She looks so good, her color hasn't looked this pink for a couple years, she has more energy then she has ever had. Jillian has always been a little grumpy, I know this was due to her heart, she never really felt "good".  Since coming home from the hospital she is so happy, She says she feels good!  Her incision site is painful for her but overall I think she feels better than she ever has:)  Here's to five to eight years of feeling great!

I am relieved this past us, I am happy she feels so good but I can't help but feel a little guilty.  We have so many good heart friends and a lot of them have to endure so much pain and heartache. Three of them Matthew (4yrs), Kaidence(5yrs) and Kylie(3yrs) are waiting for heart transplants and will be at Primary's until they get them, which has already been months for all of them!  I can't imagine what this must be like for their parents and families. Their moms stay with them practically around the clock, putting their lives on hold, relying on others to take care of their homes and other kids. These kids are hooked up to more tubes and wires than you can imagine but their spirits are amazing!  They have a way of making everyone around them happy!  Every time I see them or read updates from their moms it puts my life in perspective, I often wonder how much more they will have to or can endure. My heart aches for these families, they are in a position where someone else's child must return to heaven in order for theirs to live, I don't know how they do what they do but they are my hero's!

Please pray for our cute friends, they need them!

Friday, August 3, 2012

Jillian's Open Heart Surgery-Pulmonary Valve Replacement

I had every intention of posting each night while in the hospital, but of course that didn't happen!  Good thing our stay was only 4 days, should make it easy to catch up in one post.

Surgery was scheduled for Tuesday July 31st at 9am, we needed to arrive at 7:30am to get all ready. We had to spend most of the day Monday at the hospital doing pre-surgery visits, xrays and labs.  We also attended a pre-surgery class for Jillian.  She was able to learn about what would happen during her stay and see some of the things that would be used in the operating room like the o2 mask, IV, gown, hat and mask. She also got to smell and choose a sent for the "special air" she would breath to go to sleep.  Most kids would have picked bubble gum, watermelon, grape etc...Jillian chose banana!  She also met a child life specialist named Morgan that would be there the next day and said she would go with Jillian into the operating room and stay with her until she was asleep, which made Jillian and me feel a little better!  The class was really good for her, I am glad we went.

On Tuesday morning we arrived at the hospital at 7:30 am where we checked in, had our pre-op exam and met with Dr Burch the surgeon.  He is from the south and has a accent that makes listening to him really comforting!  He explained exactly what he planned to do and why.  He told us he wanted to put in a 23mm porcine (pig) valve, which would be big enough to last 5-8 years as she grows.  He also would place a conduit that would allow them to do the next replacement via catheter.  This procedure is fairly new, 2 years or so.  The great thing about this is it is done in the Cath Lab, and is only a overnight stay (not open heart).  He then proceeded to go over all the possible complications, that of course wasn't very fun to listen to, but what choice do you have?  After he was finished we met Dr. Pribble, the anesthesiologist.  He was more than ready to get started, so we chatted with him as we walked down the hall to the dreaded doors of the operating room.  This is the place where you say "see you later", hand over your child and turn and walk away:(  This was the part I was DREADING, even though they gave Jillian some versed to relax her she was not going to go willingly!  They told us in the class that we shouldn't say "goodbye" instead to say "see you later" they said kids associated goodbye to leaving, but see you later means you will be back soon.  Leaving her crying "don't leave me" was the hardest thing I have ever had to do!  We handed her over, waved and said "see you later" all the while fighting back tears (don't let them see you cry is another thing they ask you to do-haha) As soon as we turned to leave Jason and I were both in tears.

We went and checked into the waiting room, they said the operating room would call about every hour or so with updates, gave us a pager just in case we weren't there when they called.  The surgeon said the whole procedure would take about 5 hours, give or take depending on the amount of scar tissue from her previous surgery.  We didn't stay long in the waiting room, for one it was packed and for another most of the families there were having rather simple same day procedures such as tonsils, ear tubes or circumcisions and it was difficult to hear them call parents saying their child was finished after only being there for maybe 1/2 hour.

We headed down to the cafeteria where we met my parents and later Jason's parents.  The day dragged on, we received our first update that the anesthesia had placed all of her IV's and lines, and surgery had just began.  We waited another two hours before we got another update, there was quite a bit of scar tissue and at this point they were just getting ready to put her on bypass.  Around 2:30pm Dr Burch came out to tell us he was done and how things went.  He told us everything went well, he had to place a slightly smaller valve, 21mm due to a extra coronary artery that he found laying right up against the pulmonary artery and twisting around her aorta.  Extra arteries are pretty common is CHD kids, just because their heart anatomy is so 'messed' up!  He tried to see where the artery went and what it was feeding, but couldn't and didn't want to mess with it and cause complications, so we will have a CT scan at a later time to look into that:)  He said anesthesiology would have her ready in the CICU in a half hour or so and at that time we could see her.

So, we waited another long 30min, Last time I was too nervous to eat and when I walked into the ICU and saw my poor baby so swollen with so many tubes I almost passed out and the nurse had to catch me from falling to the floor.  I learned my lesson and brought a Cliff bar this time which I ate!  When we got to the CICU I was expected her to look like she did last time, but I was pleasantly surprised she was extubated and they had all the chest tubes and other lines covered with her gown.  She looked really good!  She was pretty out of it for the rest of the day.  Grandma and Grandpa Brunson and Simon were able to see her for a bit before going home, I am not sure if she even knew any of us where there! We hung out in the CICU for the rest of the night, Jillian was in and out of it most of the night. I went to bed in the parent sleep room around 11pm and Jason stayed in the chair at her bedside and at 3am we switched places. It was a long night but uneventful! Fun thing, our neighbor Cory is a NP in the PICU/CICU and he happened to be working that day, so he was able to take care of Jillian until he left at midnight, so that was fun.

 The next morning they weaned the rest of her major IV meds, and oxygen, took out her three (very large and painful) chest drainage tubes, and Arterial line (IV that goes into an artery).  After all of that was done she was given the OK to move to the CSU (cardiac surgical unit) we were upstairs in our recovery room by 2pm:)  The rest of the day we spent resting and trying to get out of bed to stand and walk to the potty. Grandma, Wes, Jacob and Claire came to visit, Jillian was still on morphine so she was quiet and pretty much ignored them.  Later that evening we went on a wagon ride, watched the Olympics and went to bed.  We all slept much better that night.

 We were woken up at 4:30am by the lab tech needing to draw blood, this didn't go over well with Jillian and we had to send her away:0 Instead we went down to xray for pictures of her heart and lungs, when we got back to our room they were ready and waiting to do the blood draw.  Jillian of course freaked out,(who can blame her, I wouldn't want to be woke up out of a deep sleep to a lady wanting to poke me!) so we finally just had to hold her down.  It was quick and the tears didn't last as long as the silent treatment she gave me:)  The rest of the day was spent getting out of bed for walks, eating, drinking and visiting with our friends and family.  We had visits from Aunt Jen, Aunt Tamara, Aunt Melissa, Grandma Simon, Chrissy, Jacob and Claire all of whom brought fun presents and much needed treats for us:) We also got a visited from a few of our heart friends-Brytten, Cindy and Stephanie came up on Wednesday night, and Ali Holder and her husband brought us a cute stuffed puppy.  It was a good day, especially when they mentioned home for the next day.

We woke up on Friday morning and before we knew it we were out of there, stopped at Grandma's to pick up Jacob and home by 11:30am:) On Thursday night Claire had come down with a fever so we had to leave her at grandma's since we can't let Jillian get sick.  We are going to see how she feels tomorrow and probably take her to the doctor to make sure it isn't strep or ear infection. I wish I could be there to take care of her, I don't like not being there when she needs me but I need to be here to make sure Jillian is doing good, and to give her all of her medication she has to take.  I hope Claire feels better tomorrow and that none of the rest of us get sick!

We have been home for 3-4 hours and Jillian is doing really good, all she has had for pain today in Ibuprofen and says she is fine!  It is going to be hard to limit her activity for 6 weeks once she feels good enough to play.  Right now she is just laying around watching movies with Jacob. Crazy thing is, if it were an adult that had this surgery we would still be in the ICU on heavy duty pain meds!  Kids are so resilient.  Jillian has amazed me with her ability to cope and accept that having a congenital heart defect is and will always be part of her life.  She understands that her heart will never be 'fixed' and that is part of who she is.  She is a wonderful, tough little girl with plenty of attitude and we love her!

We are so blessed, and our prayers were answered.  Thank you everyone for you prayers and acts of service we are grateful for such wonderful friends and family!  We are hoping we don't have to do this again for at least 5-8 years!

Wednesday, July 11, 2012

Our summer will be ending with...

Open Heart Surgery in 4-6 weeks!

We had Jillian's routine cardiology visit today, the one that doesn't require an MRI just a chest xray, EKG and a quick listen by Dr. Everitt.  At least that is how this appointment has always gone, today we had an unscheduled echo. We found out that her heart is more enlarged with some fluid around her lungs.  She has started to lose weight, which she can't afford to do.  Over half the blood being pumped through her pulmonary valve to her lungs is leaking back through the valve and pooling in her right ventricle causing her heart to work at least twice as hard, in turn burning every calorie she eats which makes it impossible to gain weight and now even causing her to lose!

I always knew it was a matter of "when" not "if" but I still can't believe it is time!  She will spend at least 7 days in the hospital and a full 6 weeks recovering at home (if all goes as planned!)  Which will more than likely mean she will start school a few weeks late, which she is sad about!

I will update when we find out the exact date for surgery.

Friday, May 25, 2012

Told you I was bad at this....

I warned everybody I would be really bad at blogging, and I was right!  Four months between posts is not what I had in mind when I started this.  So, here is the last four months....

* Right after Jillian's cardiac MRI we left on our family cruise to Mexico!  Both my parents and Jason's came along, it was a lot of fun.  Jason made a video that I will post:)
*The last week of March we started the piers on the last part of our home, yep...it was sinking again!  We piered 60% of it 3 years ago and hoped that would do it, but we found out that the garage side had sunk 3-4 inches!  Luckily our home owner's insurance came through and covered this portion due to a leaking air conditioner.  When we found out it was sinking again we were devastated, we had no clue how we were going to come up with the thousands and thousands of dollars it would take to put more piers in.  We decided to make a claim and pray for a miracle.  I told Jason that if the insurance would cover this then we knew for sure this was the place we were suppose to be!  It took five months and a lot of time on Jason's part but it was approved and we moved forward with the long, loud, annoying process.  For those not familiar with the process, it starts by ripping up all the concrete in the garage, then digging down to the bottom of the foundation-which included jack hammering portion of the concrete out.  After getting to the bottom of the foundation they drive steel piers (pipes) down until then are firmly into bedrock (about 25 feet for us)  then they secure the piers to the foundation (another LOUD process) when all the piers are in place they hook them up to a hydraulic jack and lift the house!  It is kind of freaky, as the house moves it creaks and moans and more cracks appear in the drywall. After that they put it all back together, which is just as bad as it sounds:)  We are now a little over two months into the process and still have drywall and paint to do....hopefully it will be completely back to normal by the second week in June!! I am so grateful we live in an town, neighborhood and ward we love because we will be here the rest of our lives.  Funny thing is our homeowners dropped us stating we were too big of a liability...LOL!
*Jacob and Jillian graduated from preschool yesterday, and will be going to kindergarten in three short months!  I am so excited and any tears that are shed that day will be tears of JOY...we made it six years and we are all still alive..huge accomplishment.  I met will the elementary principle about Jillian's heart condition, she was very understanding and we were able to put a plan into place in regards to missed days, hospital stays, recess/physical limitations, etc... I feel good she will do well in school and if her next surgery falls during the school year we are set to go!
* We were able to take our trailer out for a quick over nighter up Spanish Fork Canyon to Diamond Fork.  We have new neighbors who we invited along, we all had a lot of fun and are looking forward to many more trips this summer.  If the weather would just make up it's mind it would help in the "fun" department:)

video
Now for our plans this summer...they include a week in St. George with most of the Simon clan, June 3-10th. The Brunson family reunion the first weekend in August, IHH family heart camp the second weekend in August, plus at least two trips to Lake Powell and possibly a cruise to the Caribbean for Jason and I:)  We also may be hosting a foreign exchange student from Norway if we can get a place for her at Westlake High through the Alpine School district! It is going to be a busy, fun summer!

Friday, January 6, 2012

Cardiac MRI

On Wednesday we had Jillian's 6 month cardiology visit and MRI. These are always stressful days for us. Jillian has to be sedated for the MRI, which means clear liquids and NPO (nothing by mouth). I prepared some jello for her breakfast, thinking she would love it, nope she told me "Mom, I have told you 100 times I DON'T LIKE JELLO" oops, but she was happy with otter pops. She isn't a huge eater so this didn't seem to bother her! Once we arrived at PCMC, her anxiety grew as she knew an IV was coming. They unfortunately had to try 3 times before placing it in her arm instead of hand...poor girl, but she did awesome and of course loved getting 2 prizes for her trouble:)
Jillian hates to sleep and even under sedation tried to wake up during the MRI and had to be given more medication then they thought she would need, after that they thought she would sleep longer after, but NOPE not Jillian. She was awake as soon as them lifted her off the scanner! She did really well with recovery and we were out of there in record time.
Dr Everitt called to today with the official results- Severe Pulmonary Regurgitation, Mild Right Side Enlargement with Normal Heart Function. She said nothing had changed to much since last year...so YEAH! She wants to see us in 6 months before school starts. This was the best report we could have hoped for:)

Sunday, January 1, 2012

Happy New Year!

Well, Christmas has come and gone once again, it doesn't seem like a whole year has pasted. We had a great 2011, filled with fund and adventure.

We had a wonderful Christmas. We spent the weekend before with the Brunson's at Grandma and Grandpa's awesome family Christmas party. We ate yummy food, played with cousins, had a visit from Santa, went on a hayride around Fillmore looking at Christmas lights and ended the day with hot cocoa and donuts! I am sure this day is a lot of work for my parents, but am positive the "This is the best day ever" from 20 grandchildren squished around the kitchen table makes it well worth it!

We spent Christmas eve at grandma and grandpa Simon's. We had yummy soup, played with more cousins, sang Christmas songs and put on the Nativity play. Jacob was a Shepard, Jillian the Angel and Claire...well, she wanted to be the lamb but we didn't have a lamb costume, and I couldn't talk her into being a wise man, so in the end she wore the wise man outfit but insisted she was a lamb. You've gotta love the determination of a three year old!

Christmas morning we spent at home opening gifts, where the kids made out like bandits! From electronics, scooters, clothes, and video games. Man, they are spoiled!! We attended church which was such a wonderful way to remember the true meaning of Christmas. I wish every Christmas day fell on Sunday:) After that we spent the evening in West Jordan opening yet more gifts.

The rest of the week was spent playing with new toys, ice skating and fishing on the lake and spending time with family. As I reflect on 2011 I am reminded just how blessed I am. I have a wonderful family, good friends, everyone is healthy, and I live in what I like to think of as a little corner of heaven....Life is good!

On a CHD note, we have Jillian's 6 month cardiology and MRI appointment this coming Wednesday. As usual I am having a bit of anxiety...I always dread the unknown that comes with these visits. I am hoping we get another 3 months, but the dreaded surgery is creeping up...so we shall see?