Thursday, June 30, 2011

Iowa City

We headed to Iowa City a day early, so we could take some time together as a family and enjoy ourselves a bit.  We thought we would swim and have a good time at the hotel pool, but the moment we arrived we could tell that the amount of chlorine in the pool was going to be too much and Jules and I and our asthma issues.  We peeked into the pool right when we got there and Jules immediately said "Oh no, Mama I can't breathe in here, I better not go swimming."   I thought she would be so upset, but she was more excited about being in the hotel room.  Remember when you were a kid and how much fun going to a hotel was? Well Jules definitely gets all giddy when she knows we are going to one. In fact the day we left she said "I don't want to leave, I could live here forever!"  So that first night we lounged around, went to dinner and played Julianna's favorite games at the moment - Farkle and UNO.  We had a blast! 

On Monday she had to go in for the testing that needed to be done before her surgery.  Drew and I decided to take her to Build a Bear first, so she would have a friend with her during her surgery. 

She was so happy and thankful when we showed her surprise!  She quickly settled on a panda bear and named her Sprinkles.  :) 

 As we were walking out of the mall, Daddy saw a pink cowgirl hat in the window of a store.  He actually stopped, pointed it out to me and told me to go in and check out the price.  Now if you know Drew, you know he HATES the mall.  Cannot wait to get out of one.  So for him to actually want me to check something out in a store is unbelievable.  I went in, saw it was a good price and bought it for Jules.  She LOVES that thing.  I think its stinkin' adorable!
 After that we headed to the hospital.  Jules was so scared about getting poked while having her blood drawn.  In fact all she would talk about leading up to the surgery was her concern of getting an IV and having blood taken.  Never mind that they are performing heart surgery on her, she was just worried about the "pokies."   I will say it again - Iowa City has the BEST nurses and doctors!  After they weighed her and took her blood pressure, the nurse opened up a tube of white cream and put some on each arm.  Jules was a little concerned until the nurse told her it was NUMBING cream and she was putting it on there so Jules wouldn't feel anything while they were drawing her blood.  HALLELUJAH!!!  She was still a little scared when they went to draw her blood, but we blocked her eyes from seeing what they were doing and they were done before she even knew it and she didn't feel a thing.  Thank you Lord!  I wanted to pocket that stuff and take it to every Dr. appt from here on out for her!  If your child ever needs blood drawn, ask for it.  It will be so much better for all of you!  :)
 Big girl! 
 After all of her tests were done and we met with the Dr. - who once again was amazing and explained everything to us on what was going to happen the next day. Before we left we took Jules out to the playground to play for a bit.  She was so drained from all of the tests that she needed to unwind.  I just love everything about University of Iowa Children's Hospital.  I can't say that enough!

On Tuesday we went in to get everything started.  Jules was SO brave and did so well.  Even when we walked with her into the operating room, she looked around and said "This is SO cool"  They got her up on the table and started hooking her up to everything and that is when she started getting a little scared.  Drew and I tried SO hard to remain strong for her, even though I was fighting back the biggest tears.  Once she laid down, she was so upset and antsy, that they just blasted her with the anesthesia and she was out.  And...that's when Drew and I just lost it.  We were both a sobbing mess.  I have never seen Drew that upset and emotional in all of our time together.  It was so hard for both of us. That was our baby.  I am crying as I type this, just thinking about it.  When we walked out of the operating room, there was her surgeon who took us both in his arms, gave us hugs and with tears in his own eyes assured us that he would treat her as if she was his own take great care of her.  Seriously, this man was 

We were told the surgery would probably be around 4 hours.  Once they got the catheters into her heart, they would have to try and cause her heart to have an "event" - basically trying to get it to start beating irregularly - and this process sometimes takes a while.  Once they find the pathway that is causing the problem, they would either freeze it shut or burn it shut depending on what side of the heart it was on.  They hope for it to be on the right side because then they can freeze it.  If it is on the left side, there is a flap that they usually have to pierce for the catheters to make it through and then they have to use heat to seal of a pathway on that side of the heart.  A small percentage of patients have the flap open and they don't have to pierce it, but that isn't common.   They gave us a pager and said that they would keep us updated on her progress throughout the surgery and sent us to wait it out.  Hardest time of my life.  Hands down.

Drew and I made our way to the family waiting room where my Dad and Courtney were as well as Drew's dad Bob and Step-mom Diane.  We are SO very thankful for our families.  Drew and I don't sit too well at home, so you can imagine how we were holding up in the waiting room.  So we decided to go get some coffee and walk around.  It wasn't even a half hour into the surgery when we got the first page - "Julianna is doing GREAT and we have all of the catheters in"  We made our way back to the waiting room to tell everyone and about a half hour later we received another message "Julianna is doing GREAT!  We found the arrhythmia - it was in the LEFT side and we are sealing it off now."  At around 9:45 (only 1 hour and 45 minutes into surgery) we received another page "Julianna is doing GREAT! We have sealed the pathway and are making sure there aren't any others.  Please make your way back to Pediatric Cardiology."  We just looked at each other in disbelief.  They were done!  She was going to be o.k.! 

We pretty much ran there. :)  The surgeon came out and told us everything he had done and showed us a picture he had taken of her heart and showed us where the problem was and where he applied the heat to seal it off.  He said that as soon as the catheters were placed in her heart it went right into the arrhythmia.  Thank you Jesus.  We were SO afraid that once they got in there her heart wouldn't cooperate and they wouldn't be able to find the problem.  Miracle #1.  Then he said that she was that small percent that had the flap between the right and left sides of the heart that was OPEN.  So they didn't need to pierce anything, the catheters went right over into the left side of her heart.  Miracle #2.  He said that his team was just finishing up and making sure there weren't any other pathways that needed to be sealed off, but that they had not seen the arrhythmia in a half hour.  Good sign.  Miracle #3.  And...she was alive.  Just fine.  Going to be alright.  Perfect.  Miracle. #4.  I am not going to lie.  I had the worse case scenario planned out in my head.  I didn't share that with anyone, until Drew and I were talking about everything that night.  And he had done the same.  I was just so sure something would go wrong.  I can't explain it, but when he told us that she was going to be o.k. I almost threw up.  Months of worry and aching for it to be over with and here it was.  It was just a day of so many emotions.  Emotions I didn't even know I had. 

He stayed and talked with us some more about his family and what a great marriage he has and how he could tell what great parents we were and how strong our marriage was.  He was just so comforting and amazing with us.  Drew and I both agreed that we wouldn't have been able to get through the day without him.  God truly lead us to this man to be Julianna's surgeon. 

They wheeled Jules out shortly after that and she was taken to recovery for an hour.  We were able to stand there and be there with her when she woke up.  The first thing she said was "Hi Daddy, I slept through the WHOLE night!"  :)  (She always says that to us when she sleeps through the whole night without getting up.)  She was in and out of it for a while, but once she woke up we reminded her that she had to keep her legs still, so they wouldn't bleed where they made the incisions and inserted the catheters.  This was the hardest part for her.  She did great at keeping her legs still, but as she did, she continued to say "this is SO hard"  :)  And she had to keep them still for....5 hours.  VERY hard for a 5 year old to do that. 

After recovery and she was completely stable, they moved her to a regular room.  Everyone came in to see her and sit with her.  She was able to order anything she wanted to eat (lasagna, string cheese and a cookie) and they brought her movies and a DS to keep her occupied while she was there. To be honest the afternoon flew by.  Before we realized it, it was 3:30 and the surgeon came in to check her progress and said that if she was able to get up, use the restroom and walk without her incisions bleeding, we could go.  So she did!  He said that most kids get up, go to the bathroom and start to bleed.  So the 5 hours has to start all over again.  We were so worried about that, but she was just fine and feeling great!  Miracle #5. 

So once we heard that she was cleared and we could go, she wanted to be changed into her nightgown, get the IV taken out (which thankfully they put in when she was out in the operating room, so she didn't feel a thing) and was ready to get the heck on out of there! 

It just all happened so quick.  Seriously, Drew and I thought we were there for the long haul that day.  4 hour surgery.  5 hours of recovery and probably 5 hours more.  In fact we planned on just spending the night at the hospital.  (all pre-op forms said to plan on it.  You rarely get to leave the same day as the surgery), but here we were with our precious child - able to leave.

So we scooped her up (once she was out of the wheel chair) and took her back to the hotel!  She was amazing.  When we got back to the hotel, Drew and I were just SO exhausted, so we thought we would all just rest and take it easy the rest of the night.  Not Jules.  It was like a new child.  So much energy and ready to go.  :)  After a little down time (we insisted)  we told her she could have whatever she wanted for dinner.  So we dined that night on a lovely dinner of Olive Garden Salad and Lemon Creme Cake, and Chicken Nuggets from McDonald's.  We hardly ever eat fast food, but last week we pretty much let her eat and have whatever she wanted:) 

On Wednesday morning we got up and headed home.  You would never know that she had just had surgery the day before.  She was just so amazing.  I know I keep saying that, but she was truly amazing through everything.  The perfect patient.  The whole way home Drew and I just kept looking at each other and breathing sighs of relief.  It.was.over.  She.was.fine.  We.were.fine.  Life.was.good!  Thank you precious Lord Jesus.  Thank you.

So don't think I am weird for posting these pics.  They are mainly for Grandmas and Aunts to see what a brave and wonderful little girl Julianna was through the whole thing.

Post-Op Recovery. 
 Getting ready to be discharged = one happy little girl!
 Sprinkles was happy too. :)  Jules had to wear a heart monitor for 24 hours after the hospital.  Sprinkles got one too. :)
Leading up to the surgery - the one part Jules was most excited about was....the wheel chair ride to the car.  She couldn't wait to be in that thing.  And for me to push it. :)  I think Drew actually pushed, but I was by her side the whole time just loving on her and being so thankful for her.      
So this is kind of a neat story - see the little stuffed puppy Jules is holding in this pic? When we were leaving her nurse came in with 2 new beanie babies - a pink, blue and purple butterfly and this puppy. She told her Jules could take one home with her. I thought of course she would pick the girly butterfly, but she immediately said she wanted the puppy. Earlier that day while Bob and Diane were still there we were talking about Drew's childhood and family pets and we chatted for a bit about the dog Drew had while he was growing up. A dog named Bernie. Jules loved that name and thought it was a cute name for a dog. Well after the nurse gave her the stuffed puppy my dad asked what his name was. He was joking around that he already knew the puppy's name was "Bob." He, Jules and the nurse had some banter back and forth about the puppy being named Bob and not being named Bob. So the nurse took the plastic cover off of the paper heart that said what the puppy's name was and can you guess what name was printed on the tag........BERNIE!!!! I just thought it was such a neat coincidence. Literally the perfect ending to a pretty perfect day. :)

1 comment:

Amy said...

Great story and so glad she is okay now! :) Iowa City is a wonderful place...we love the numbing cream as well. I ask them every time for it! glad everything is getting back to normal for you guys!