Thursday, July 12, 2012

Twenty-four hours later


Well....it's been kind of a hard twenty-four hours for Ivy. She's having trouble sleeping, her pain medication makes her crazy itchy, and she still doesn't get to drink as much water as she'd like. She's thrown up a few times (which is why they are limiting her liquid intake), so they have put her on some reflux medicine and anti nausea medicine and she hasn't thrown up since about 8:30 this morning. Hopefully she'll be allowed to eat something very soon.


She had her arterial line removed around 1 pm and we're hoping to have a few more lines removed before the day is out. She is quite grumpy and opinionated and is quick to tell people when she doesn't like them (which is often). She's thrown a couple of tantrums over being thirsty and even tried to rip a few chest tubes out! She also really wants to sleep on her stomach, but can't for obvious reasons. She's feeling kind of picked on, I guess.

The good news is that she has been able to sit up a little bit (she even did a sort of dance while watching happy feet), and after she gets a few more lines out she'll hopefully be able to move around more, and maybe I could hold her, because she really would love that (and so would I!).



 Please keep not as sweet as normal Ivy in your prayers today. She could really use some good sleep and relief from the itching (Benadryl just isn't cutting it!).

Wednesday, July 11, 2012

Nurse shift-change= perfect time to wrap-up the day

Man, its been a long day!  Long, but pretty darn good under the circumstances.  We woke little Iver's up at about 6am to get to PCMC by 7 and she was of course super happy.  She was a perfect angel when she got vital's checked and measurements taken, and she was super excited about her spiffy operation jammies and yellow "sticky" socks.

 She loved the toys in the waiting room and didn't really want to be away from them, but when the anesthesiologist came to get her for the surgery, she went without any crying or squirming or complaining.  She is such a sweet girl.  It was hard for us to say goodbye to her, but she willingly gave hugs and kisses and we watched her be wheeled away in her little wagon.
 We waited in the surgery waiting room for 7 1/2 hours.  Luckily the docs called with plenty of updates and we had lots of entertainment.  Scott played games on the iPad and did tons of homework, while I made Ivy an amigurumi Ariel doll (check out the sweet diggs below).  We also had Gma and Gpa Floyd there to visit for a while, and Gma Marde stayed home with our other kids, taking them to swimming lessons and to Macy's (and probably did lots of other cool things).
 We finally got to see sweet Ivy at about 4pm.  She opened her eyes right as we got to her bedside and immediately informed us that she needed a drink (and continued to inform us every time she woke up), but no drinks allowed so soon after surgery.  Poor girl.  She had a lot more blood drainage than they expected for the first little while in the CICU (cardiac intensive care unit), but its stabilized now.
 All of her vitals look great!  Including her oxygen saturations (the blue 94), we've NEVER seen that number so high!  We had to get a picture of that for evidence!
 Her many meds (although three of them weren't actually being administered at the time, they are there on an as needed basis).  She's doing so well!
 Her temperature started to go up, which they tell us is normal.  So she got a cool rag on her head and they let us give her a popsicle which "tasted redish/pinkish" according to her.  It kind of satisfied her a little, but she's still begging for water!  But the rag and popsicle are helping her temperature go back down.  She also complained about "hurting" so she was given some morphine for pain just as we were leaving for the nurse shift-change.
 She is still so cute and pleasant (even though she really wants that water, and no one is giving it up).  The nurses are doting on her and feel lucky to have our cute girl as a patient.  What a sweetheart!
Thanks to everyone that prayed or thought about our little girl today.  We appreciate all the love we've received.

update number one


Ivy is doing well.  She's almost off the bypass machine.  She should be transported to the PICU (pediatric intensive care unit) in about an hour and a half and we should hopefully see her about an hour after that.  Thanks for all the prayers...

Gma Marde, our phone service is not working at all...none of our texts are going through.  I hope the kids are doing okay.  Thanks for all your help!

Surgery has begun


Little brave Ivy headed back to the operating room at about 8:30am.  She didn't cry at all (although tears were shed by others).  The doctors were going to start with a transesophageal echocardiogram (an echo down her throat) before they began the actual surgery.  The surgeon (Dr. Burch), expected to start on the surgery between 9:30 and 10 and finish by about 3pm.  We just met Dr. Burch for the first time this morning, and he seems like a nice, capable guy.  Although I'm extremely nervous, I am sure she is in good hands.  Please keep her in your prayers and we'll update again in a few hours.

update:  As I was posting this, we got an update that surgery has just begun and she is doing very well.  It should take about an hour to get through all her scar tissue and they will update us again as soon as she is on the bypass machine.

Monday, July 9, 2012

Surgery WASN'T Cancelled


Remember 3 years ago when we came to SLC to for Ivy's Glenn Operation right around the 4th of July and the docs told us the surgery had been cancelled and somehow nobody had informed us?  We had that day in the back of our minds today as we went in for Ivy's pre-op stuff (Echo, Ekg, X-ray, bloodwork, physical, etc), but were happy to find that history did not repeat itself.  Surgery is still on for Wednesday the 11th.

We got to the hospital this morning just after 8 to get all of her stuff done.  We were actually scheduled to have to go in both today and tomorrow (today for cardiology stuff, tomorrow for cardiothoracic surgery stuff), but I called the hospital in advance and arranged to get it all done in one day so we wouldn't have to come so many days in a row.  One department ended up giving us a hard time (ahem..same day surgery *cough cough*), but after talking to more people and much persuasion they gave in and did the physical and medical history that they didn't want to do until tuesday.  I'm so good at nagging.

Anyway, Ivy was a trooper and only cried twice the whole day (even though she wasn't allowed to eat until after the echo at 1:30pm).  One crying incident occurred during bloodwork, no surprise there, and the other happened when a little boy in one of the many waiting rooms started to play with a car that she had previously played with.  Other than that she was pleasant as punch, and even left her first urine sample in a cup. I can't even do that under pressure.  Here are some pictures we took throughout the day.  Enjoy!

Not the car that tears were shed over, but similar.

Waiting to meet the cardiologists

During her EKG....She had 13 wires attached with stickers (it sucked to take all those stickers back off!)

Finally time for lunch.  She's SO happy!

A GIANT bite!
Ps...The other three kids are still alive and doing well.  They spent the day with Grandma Marde at swim lessons, jumping on the trampoline, and getting books from the library.  Grandma Marde is so much fun!

Saturday, July 7, 2012

3 days to go


Hello everyone!  After 1 full week of no internet at wonderful Bear Lake with Scott's awesome family, we are now at Grandma Marde's with some wifi!  Yay!  There are too many blog posts in my dashboard and not enough time, so I apologize for not reading if you have posted in the last 7 days. Also, if you are looking forward to my Bear Lake post (which I'm sure you are!) you'll have to wait til I get around to it.  Its a busy time for us right now.

Anyway, I actually have a reason for posting today.  Ivy is having open-heart surgery on Wednesday.  We are having a family and friend fast tomorrow.  If you are willing and able to fast for our sweet little girl and her surgeons this week we would really appreciate it.  If you aren't into that sort of thing, regular prayers, crossed fingers, and happy thoughts are welcome.

Oh man, I love that face!

We have a busy week ahead full of x-rays, meeting doctors, getting blood work done, and of course surgery and recovery.  I do not call individual people to update on Ivy's status...its way too hard (plus, no cell service in the hospital, but there is free wifi!), but if you want to keep up with everything that goes on, please check the blog (I don't have facebook), I will update regularly.

Please keep little Ivy in your thoughts and prayers this week.  Thanks in advance!

Tuesday, June 26, 2012

Our Lives Forever Changed


I don't know if I've ever written about that day specifically, because at the time, I couldn't talk or write about it.  I was too devastated.  I don't feel devastated anymore, so here we go.

I remember that day four years ago like it was yesterday.  I know what I was wearing, what I was thinking..everything.  I was so excited to see my little baby on the ultrasound.  Scott and the boys came with me, they were excited too.  We had chosen not to find out the sex of the baby again, because its just more fun that way.  The boys were worked up and wild.  They could barely hold still as the ultrasound technician showed us our little baby.  After a time, she grew quiet, and the ultrasound took forever.  We didn't really notice since we were in the process of trying to keep two small boys quiet and calm.  When she finished she instructed us to go back to the waiting room and the doctor would call us back soon.  We did, but by this time the boys were sick of being still and quiet so Scott took them out of the office into the hallway to play.

I was called back to see the doctor alone.  Instead of taking me to an exam room I was taken to her personal office and she placed a box of tissues in my hands.  I was confused, I didn't know what was going on.  She said calmly and quietly that they thought there might be something wrong with the baby's heart.  I was stunned for a moment.  I just sat there looking at her.  She said that they weren't experts but there was definitely a problem.  The information began to process in my brain and the tears came.  She asked if I'd come to the appointment alone and when I said no she asked the nurse to go find Scott and the boys.  She sat silently with her hand on my shoulder and I sobbed while we waited for Scott to arrive.

When Scott walked in and saw what was going on, his smile immediately faded and he asked what was wrong.  I told him about the baby's heart.  He seemed stunned too.  He didn't say much, but he didn't cry.  The doctor told us that they'd set up an appointment with Maternal Fetal Medicine (the high risk doctors) department for later that afternoon, where they'd do a level 2 ultrasound to confirm a heart defect and then after that we'd be sent over to see a pediatric cardiologist who would perform a fetal echocardiogram to give us a diagnosis.

We walked out of the office in shock.  I couldn't talk, only cry.  Scott was still very quiet.  After we buckled the kids into their car seats, Scott wrapped me in a warm hug for several minutes while I wept into his shirt. We then drove over to his office to tell them that he wouldn't be back that day.  Scott went inside for a while and when he finally came out I could tell that he had been crying.  He told me that Russell (his brother and boss) wasn't there, so he'd called him to tell him what was happening and said that he and his wife, Collette were on their way over to pick up our boys so we could go to the rest of our appointments alone.

After the boys were in the loving care of Collette, we headed back to the doctors office to meet with the Maternal Fetal Medicine doctors.  I had finally gained some control over the crying, but its absence left a big headache.  The doctors did a very silent ultrasound (they instructed us not to ask questions until it was finished).  It took a long time, and before we could ask questions they decided to look over everything and discuss it together before telling us what they thought.  They left us alone in the room for a long time.  Scott and I both fell asleep (it had been an exhausting day).  They finally came back and told us there was no mistaking the heart defect, although they couldn't tell us specifically what it was.  We also met with a genetic counselor to try to figure out where this came from, which was inconclusive.

We met with the pediatric cardiologist, Dr Womack, a few hours later.  He was very nice and understanding, and we liked him right away (he was wearing a charlie brown tie and red converse shoes, and we could tell he was a fun guy).  He preformed the fetal echo which also took a very long time and when he was done he showed us what he suspected.  He told us that the left side of the heart was severely underdeveloped and that the aorta was either extremely small or pinched off all together.  The baby also had a condition called heterotaxy in which other organs where affected.  It was too early to tell but he suspected the baby had multiple spleens (known as polyspenia) (turns out he was wrong about this, the baby had no spleen, known as asplenia, which is still part of the heterotaxy).  He said that there was also a chance the baby would have Down Syndrome (which she did not).  He instructed us to NOT go home and search the internet, as it would only scare us.

After our marathon of appointments we headed to Russell's house to pick up the boys.  While there, Scott and Russell gave me a priesthood blessing, during which we all cried.  That night, we looked up all the symptoms on the internet (against Dr. Womack's orders) and found a condition called Hypoplastic Left Heart Syndrome.  Despite the doctor not giving us this specific diagnosis, I knew this was what the baby had, and he was right, it did scare me.  I was devastated.  I cried a lot for many weeks.  I turned off my phone and stopped talking to people for a while.  I don't know why.  I just didn't want to talk about it.  Looking back, I guess I should have handled it differently, but at the time, it seemed logical to just shut everyone out.

Our lives changed forever that day, but not for the worse like we thought.  We got our beautiful, tough little girl out of that horrible situation, and we wouldn't have it any other way.  Scott and I grew closer together as couple, and grew a closer relationship with our Heavenly Father as well.  Ivy has enriched our lives in so many ways that I know wouldn't have happened without this challenge.  We are so grateful for her and all that she's gone through, and that we still have the pleasure of her company in our lives.  I will never forget how I felt that day, but I am glad that I can look back more positively now.  Heavenly Father doesn't give us challenges that we can't handle, and though at the time, I felt like I couldn't handle it, I did and everything turned out okay.  Remembering our past challenges is helping me get through our upcoming challenges for the next several months, and I know that we will get through it all okay.

If you're still reading, thanks for sticking with this long post.  Have  a good day!