Wednesday, May 13, 2015

On Matters of Her Heart

I often wonder what to disclose on this site.  Just because something is part of our journey doesn't mean that everyone gets to have a little slice.  And sharing some things can be just downright scary.  But ultimately, I share because we need the prayer and the good vibes put into the universe.  And if I kept this one thing from our "journey" now I would be leaving out a big scary piece.  And I want to look back and know that it wasn't really all that scary and all things worked together for the good.

Back on March 30, Allyn had an echocardiogram.  Looking back, I'm really not sure why we haven't had one before given all of the issues.  We waited on results for over a month.  We emailed the doctor who put in the order just to touch base with him and make sure everything was okay.  Because surely if something wasn't okay they would have been in touch with us right away. 
 Well, finally last Tuesday our geneticist got in touch with us and they had reviewed it.  (We still aren't sure how it fell through the cracks and took so long for someone to review).  Ben took the phone call and he learned she had a whole in her heart, a PDA.  This is something that has been there since she was born and we should have caught it sooner.  Someone should have caught it.  We needed to be downtown Thursday for an appointment with a cardiologist. 

 So Thursday we have to take Nolan out of school at lunch time because on short notice it was pretty much impossible to find someone to watch him for who knows how long. 

 But he wasn't sad about it.  Not one little bit. 

 Neither was she, before the doctor came in.  But she SHUT IT DOWN when he arrived. We learned that not only does she have a smaller patent ductus arteriosis (PDA) but she also has a moderate to large size atrial septal defect (ASD).  Both of these are congenital heart defects and have been present since before she was born. 

These defects are putting a lot of stress on the right side of her heart.  She currently has a very enlarged right side of her heart and the pressure difference between the right side and left side is 30 mmHg (normal is closer to 5).  Additionally these defects cause slow growth, failure to thrive and increase sweating.  These are things I have been talking to every doctor about since she was six (SIX!!!) months old.  And never once did any doctor think to check her heart.  We were always so caught up in her spine.  I had high amniotic fluid during my pregnancy and we could never find anything.  She had an elevated breathing rate post delivery and we never thought to check her heart. 

I'm angry: at myself, at the doctors, at the world.  I feel like someone should have thought to check.  I don't know that it would have made a difference, but maybe it could have.  But I'm reminding myself that is done.  We have to move forward.  We have to fix this.  We came back from our appointment with a bit of a game plan but won't know more because unfortunately the hospital where we are seen is in the process of reworking their heart catherterization lab and there was a big cardiologist meeting in San Diego as we were learning all of this. 
After a long drive back from the city (why are all of our appointments over with just around rush hour?) we came home to play outside and share the news with our families.  I had to carry peanut around because she was wearing an ECG monitor for 24 hours and pissed off at the world about it.  The boys "leveled up" in a game of water guns.  

Oh, that monitor was not our friend.  
So now I'm repeatedly reminding myself that now we know.  Now we can piece together a game plan.  One that provides her the utmost quality care we can find and heals her heart and gives her still very crooked spine a chance.  I don't know if the two things are working together.  But I'm trying to have hope that she has a heart cath that is able to get the necessary diagostics and they can repair the holes during the procedure and open heart surgery will not be necessary.  The cardiologist reminded us that these are fairly common procedures.  And we are strangers to common.  But he did say her case was complicated so he would be reviewing it more this week and talking with other doctors and reviewing literature. 
So if you read this, say a prayer for her.  Say a prayer for us.  Let her heart be repaired.  Let it not impact negatively her spine.  Let it allow her to grow and thrive.  And let things start looking up.  

Monday, May 11, 2015

Go West

For Spring Break this year we traveled to the Denver area.  Ben's sister lives in the city and we were able to get a home in the Granby area to stay.  It was nice to have a few days to hang out with Ben's family and the boys got to enjoy their fill of winter sports. 

The Saturday before our neighborhood had an Easter Egg hunt.  I look frightful, but Allyn is looking precious.  She loved every second of it and cherished her five eggs that she was able to scoop up before the faster kids could get to them.
 Nolan loves to stay abreast of safety information on the plane.  But we flew Southwest this time and they had the free tv.  So it was a nice break to not have to answer 30 questions regarding evacuation.
 When we got there the weather was spectacular.
 Emily got there the first night and the kids were so happy to see Lala/Umie.
 The first full day we were there Allyn and I hung back in the house.  She is SO HAPPY when she is not restricted by that cast.  We played and walked.
 And watched tv.
 The next night Ben's family arrived and this little girl had some people wrapped around her finger.  And she got quite good at tossing the dice.
Everyone was happy to climb on Poppy.

 Mimi and Poppy had a little birthday celebration for Nolan while we were out there since they would not be able to be here for his birthday this year.
I am so happy that Nolan was a trooper on the mountain.  I think he really enjoyed ski school and we will definitely go back soon.  He told us how they went to see where animals had scratched on trees.  That was his favorite part of the lesson.
 On our last day there, the boys went tubing.  We had already left the condo so Allyn and I sat in the car for about an hour and a half and watched this view.  My glasses were of zero help to figure out which group was "mine."
 And girly was OVER IT.
 But boy did he love it.
 Our flight back to Midway was awful.  For the very first time in my life I got sick on the plane.  I felt fine until we got into the Chicago area and it was so windy.  I had consumed an entire bottle of water and a mini package of Cadbury mini eggs.  I made it all of the way to the gate and then filled up the bag.  Ben had already taken Allyn off of the plane but I had to get Nolan and our diaper bag and the barf bag.  I was almost in tears because I was embarrassed and overwhelmed.  And if that never happens again, I will be so happy. 

When we got back, the next morning was Easter Sunday.  Nolan received a fish tank.  He was so proud.  He got some fish:  Salary and Marky.  (And Marky II and Marky III and Marky IV). 
I loved being able to take a trip to see family and have fun.  But next time, please please pretty please, let it be somewhere warm.