Friday, November 20, 2015

And the Beat Goes On

With much anticipation, we FINALLY headed to University of Chicago this past Tuesday for Allyn's heart cath.  This is a procedure we have been trying to have done since July.  It's totally scary when you wait that long for something and it finally arrives.

Allyn went to school through last Thursday.  We purchased some pediatric size masks for her to wear in the classroom and on the bus ride home.  I kept her home on Friday.  Her school had a parent-child activity day.  I decided it was just too risky and a friend sent me a text saying people were coughing all over the place.  It stinks to have to limit your kids activities but I definitely made the right choice.

THIS SWEATSHIRT.  It's from the Gap toddler section.  She loves it.  There is even a tail on the back. I should also add, Ben hates cats.

Mimi and Poppy made it to town on Sunday.  Both kids were beyond thrilled to see them.  We haven't seen them since Emily's wedding in September.  Just wish it could have been under more fun circumstances.  They came to keep an eye on Nolan so that Ben and I could both be at the hospital with Allyn.  I kept Allyn home from school on Monday too.  We cancelled occupational therapy.  Better safe than sorry.  I had to take Allyn in for a pre-op appointment on Monday too.  So Monday ended up being a busy day.  And going to sleep on Monday night was next to impossible.  Racing thoughts.

Tuesday morning we hit the road around 6:15 a.m. to make our 8 a.m. scheduled pre-op time.  Interstate 55 traffic almost always sucks.  We got to the hospital right on time.  One of her cardiologists got called in for an emergency so they were running a little behind.  Around 9:45 a.m. she finally headed back to the cath lab.  I got to go back with her.  You never get used to watching your child be put down with gas.  Ben and I headed downstairs  to grab a bite to eat and not talk about surgery.  Around 11 a.m. we headed back up to the waiting area.

Within 15 minutes of getting back the other cardiologist came out to talk to us.  He started the transesophogeal echocardiogram and they noticed SIGNIFICANT mitral valve regurgitation.  Never once have we seen this; not on her first transthoracic echo, not on the first TEE, not on the MRI.  So it chose to show up on the day when all of our hopes were hinged on this procedure working.  He said they were going to finish up and they would come out to talk to us.  So I held back tears and let my thoughts race quietly in the waiting area.  I looked at news on my phone and generally tried to be somewhat positive for the next thirty minutes.  

Both doctors came back and they had still not completely given up hope for placing the occluder for the ASD and also closing the PDA.  But we had to make some choices.  If the valve was really leaky it would need to be repaired.  It would absolutely have to be repaired with open heart surgery.  And if we successfully closed the ASD with a device, it would have to be removed to repair the valve; not an easy thing to do.  But they were not sure the valve really was leaky.  It looked normal on the transthoracic echo and also all of her pressures were "normal" (at least where we expected) during the heart cath and she has no left heart enlargement.  So one of the four measures showed a leaky valve and the other three were good.  So did we want to try to close the holes?

After a lot of back and forth, we decided to not try to close the holes on Tuesday.  It was a really difficult decision.  On the one hand, open heart surgery has much higher complication risks and longer recovery.  But we wouldn't want to potentially do more damage, and we just couldn't be sure that we wouldn't.  So we didn't.  And I still am not 100% on that decision.  Her doctors will be sending her info to other hospitals and they will review.  I hope we can get feedback and make a decision next week.  

And this is where it just doesn't make sense.  I'm okay with where we are.  It is a little heartbreaking.  I just want her to be better.  I often find myself fearing losing Allyn.  And I don't think it is an unwarranted fear.  She is the most joyous of children and I am at my best when I am with her.  (Nolan's great too, but if you spent a moment with her, you would see what I mean).  If I could hold her tight and never let anything bad happen to her, I would.  But ultimately, her health is just out of my control.  

I prayed about this surgery.  I prayed about the occluder.  I really really really wanted this surgery to work.  But I also prayed for the future.  If this occluder was every going to be problematic, then the surgery would not work.  And that's where faith comes in.  Maybe God was saving her in a roundabout really stressful way.  Because the future with that device wasn't the best for her.  She's "complicated", "unique", and "academic" as so many doctors have told us.  We still don't know the whole picture of what is going on with her health and ultimately there probably isn't another case like hers that we could compare.  I'm somewhat terrified of the number of surgeries in her future: her heart, repeated spine operations, and who knows what else.  But in the terror, I find some peace.  And I have no doubt that it comes from God.  It comes from prayer, and not my prayer.  Every single person that has ever prayed for her healing.  If you have, thank you.  You have given me peace when I should be a ball of nerves and bawling my eyes out.  Instead, I'm able to focus on her, make educated and informed decisions that could be incredibly emotional, and overall just be a good mommy.  

So while this time wasn't the outcome that we hoped for, we move forward.  Stronger, more informed and maybe even a little bit sillier.  

Thursday, November 5, 2015

The Waiting Game

Prepare for the worst.  That's one thing I have learned to do when you have a child who will be going under anesthesia during cold and flu season.  

Allyn was supposed to have her heart catheterization yesterday.  It didn't happen.  She got sick on Sunday.  And this is where I step on toes.  Please keep your sick kids at home.  If they are running any kind of fever or seem off, please don't give them ibuprofen and send them to school or childcare.  I know some families have a hard time making ends meet and need to go to work.  But there are families like ours who, because of exposure, have to cancel really important procedures.  And there are kids worse off than Allyn.  Children with compromised immune systems who really CAN'T get sick.  And while we are on the subject. Vaccines.  We are lucky that Allyn can receive vaccines, but there are some kids that can't.  Do your research; get preservative-free ones; space them out. But please vaccinate your kids.  Because the health of a lot of really sick children (and even some adults) depends on it.  

So there's my PSA.  For today.  Putting soap box away in 3, 2, 1.....

Someone said I was handling it well.  And then later I broke down in tears.  I feel like I have done EVERYTHING right.  And still, here we are.  So, yeah, I'm a little devastated this procedure is getting pushed.  And if you say everything happens for a reason, well, I can't even respond to that.  It may be true, but it really is a crappy thing to tell someone.  I also told someone I should probably be taking an anti-anxiety medication.  But given my family's history of addiction, I just can't.  I would have to take it every day because every day is stressful and I'm constantly anxious.  And I don't want to get used to feeling numb.  If it weren't for some serious exercise, I would probably have a stroke.  Thank goodness for a gym.

Onto fun stuff.

I got this fun new shirt.  It's from the Gap boy's department.  I am wearing an XXL.  It's not supposed to be 3/4 sleeve,but I just love it.  (I had to crop out a lot of mess around me in the office.)  And when you have a first-grader who loves Star Wars, it's a hit with him too.

Still loving school.  Here she is as she spots her school bus.  Happy, Happy, Happy.  Her shirt is from OshKosh and says "Lost Crown.  Reward if Found."  Couldn't fit her personality more.  

She had a pulmonology appointment last week.  They feel confident her pulmonary hypertension is due to only her heart condition and it should resolve once her heart is repaired.  Good good news.

We also had an orthopedic appointment.  The brace just isn't holding her spine the way it should.  Her curve is 49 degrees in the brace.  So it's even more out of brace.  We will be going back to serial Mehta casting once the heart is fixed.  I have been so grateful for this time we have had to be a kid and it's a little sad to know we are going back to cast life.  But I was prepared to hear it and I know ultimately it's what is best for her spinal health.  

And the loves on Halloween.  Elsa and a Zombie.  Allyn was by far the cutest Elsa I have ever seen.  And Nolan loves his scary costumes.   His sister, however, was not a fan of the mask.  

We have the best neighborhood for trick or treating.  Lots of really good candy, friendly neighbors, and it's totally walk-able.  Allyn and I only hit up about 10 houses and then came home to eat some dinner and hand out candy.  It was cool and drizzly.  Having grown up in Mississippi where my Halloween costumes were often sleeveless, the idea of layering up is bananas.  But this year was quite the improvement over last with the freezing rain and 30 mph winds.  If the weather is ever 50 degrees and clear on Halloween night, I'm pretty sure Nolan could cover our entire neighborhood.  

Back to life, we hope we get in for the procedure in the next couple of weeks.  And we really hope things go well and it's the only heart procedure she needs.  Until then we'll be hanging out with our medical face masks and doing a lot of hand washing. 

Monday, October 26, 2015

It's Not All Kittens and Rainbows

Today was going to be a nice weekend update post.  But it's not.  It can't be.

My heart aches right now.  Aches. And I am beyond angry.  You see, I have two younger sisters.  And the thing about sisters is that you are close even when you aren't.  And we don't see each other often and we don't talk much and we live like a million miles away but I love my little sisters dearly and I always want what is best for them.

(Yeah, I promise I'm their biological sister.  Same parents.  Crazy genetics).

My middle sister has battled mental health issues and drug addiction for as long as I can remember now.  She was the one who drank in high school and started smoking when she was oh so young.  And from there it progressed, like you so often hear about.  She did marijuana and prescription pills and then it moved onto other things.  And she would go to rehab and it would stick for a bit, and then it wouldn't.

And I can't tell you what goes on in the mind of an addict because I honestly have NO FREAKING CLUE.  And I don't think her story is mine to tell.  But my feelings about it are real.

Her addiction has destroyed her family; it has destroyed our family.  Because you always love your kids, my parents have gone above and beyond to make it better.  And it's like she doesn't even care.  Or maybe she does.  But I don't know addiction.  And I'm angry with her for being so selfish and such a burden (emotionally and financially).  And I HATE her for what she is doing to her kids.  I know I would do anything for my children.  Most parents would.  But when you are staring in the face of an addict, I don't know that you can say that.  And I feel like the reason "you don't understand addiction" as true as it may be can't (or shouldn't) get in the way of the love you have for your kids.

The lies.  So many lies.  She's clean; she's good; everything's fine.  Here is a woman who has barely worked a day in her life and has always found someone to "take care of her." Well, she's not taken care of, she wasn't fine, and she was using a drug that most likely will at some point kill her because she will overdose.  Yeah, let that sink in for a moment.

But then I think she is probably fragile and can't hear these awful things that I think about her.  At a point I think I have to tell her that I fear for her life.  When I go months without hearing anything about her, I wonder if she is dead.  Would any of us finally have some peace if she was?

So today, I think about all of the families out there dealing with addiction and the heartache is causing them. Maybe one day I will find the strength to let her know what a horrible thing I think she is doing with the drugs and the lies and misery, but for today I just put it out there so maybe we can make it through another day.  

Thursday, October 22, 2015

Things are Getting Real

Oodles of doctors appointments coming up.  We get to meet with a pulmonologist and have a follow-up with her orthopedic surgeon next week.  The following week is her heart cath and punch biopsy to try and diagnose her genetic condition.

And I'm so many things:  nervous, excited, and indifferent.

Nervous:  What if something goes wrong?  What if we can't fix it?  These are my worries.  I know we have sought out very competent doctors, but things happen.  And the reality is that they can happen to anyone.  And if they can't fix it with the heart cath, that means open heart surgery and long recovery times and the possibility for more complications.  

Excited:  This could be the path we need to go down to get things fixed and get her to her healthiest.  What if we make a genetic diagnosis so we can prepare for those things down the road like spinal surgery with more certainty? 

Indifferent:  This has been our journey for a long time now.  It's been so taxing there are times that I really just have no feelings about it anymore.  I just go into a zone and don't think about it.  It's selfish, but true.  

Image Courtesy of Bethany Blair Photography

Being a parent is always hard.  And with being a stay-at-home mom, most of my worth is tied up in my kids right now.  And for me, that makes it harder.  It's all I think about.  And then to have Allyn have all of these really complicated medical things (with no answers) going on daily....well, it's just a lot.

So if you read this and you think about it in the next two weeks, say a really big bold prayer for this sweet little girl of ours.

Monday, October 12, 2015


We had a long weekend.  Our school district was out Thursday and Friday for parent teacher conferences.  Ironically, we are not out today.  Sometimes I just don't get the logic.

Fall is trying to settle in to the Chicagoland.  The trees are turning and some mornings are brisk.  But then we have and 80-degree day.  And it's supposed to frost this coming weekend.  More things I don't understand.

Wednesday the kiddos got out of school and Ben was traveling (again).  When he is not home I really try my best to keep the kids on the go and out of the house.  Being home results in lots of terrorizing: me and each other.  But when we are gone, things seem to be more manageable.  Wednesday early evening we headed up to Nolan's school to play on the playground because I was confident there would be other kids there.

 We stopped in the garden for some pictures (and to look at all of the fun stuff they are growing).  One sweet picture.
And one silly picture.

On Thursday morning we got up and headed to the gym.  I do a pilates mat class in the morning and didn't want to miss it.  The kids usually have a decent time in childcare there.  After the gym we headed to DeEtta's bakery for some yummy goodness.  (My children would eat their sweets every day).  After loading them up with sugar I decided we would hit up the DuPage Children's Museum.  They had finally reopened after a flood in January and we had not been since June of LAST YEAR.  And since we have a membership, I figured a day off would be a good time to make a visit.

 They were both big fans of the wind exhibit.
 It's SOOOO windy.
Upstairs was math and gross motor.  They played up there for a while too.  We finally got out of there around 2 p.m.  Allyn had speech therapy around 3 and neither kid had eaten lunch.  There was a lot of pouting as we left but I knew I didn't want to set myself up for disaster.

Ben came home LATE on Thursday evening.  We had a slumber party in mom and dad's bedroom.  Since Allyn had not napped, she went right to bed.  Which is good when you have a brother who won't stop talking.

Friday morning we had parent teacher conferences, then we went to lunch and Costco and Whole Foods and Allyn and I came home and napped.  I spent the evening cutting out Box Tops for Nolan's school.  And then I found a picture Emily had sent that her wedding photographer had taken.  And it just captured so much of our girl in one image.

Image courtesy of Steve Tinetti Photography. 

This girl LOVES BIG.  She has a spirit that will absolutely melt your heart.  And it really goes without saying that she has her daddy and me wrapped around her finger.

Saturday was early morning soccer and a lot more of stuff around the house.  And then yesterday I got to go to my happy place.  Which place is that? You ask.  Ben took the kids out for lunch and ice cream and to the Nature Center and playground for almost THREE AND A HALF HOURS while I cleaned the house.  It may seem lame to a lot of you, but I actually find cleaning to be a super peaceful time.  I enjoy things being put in order and feel a sense of accomplishment when I get them there.  And to get to do it alone and not have it destroyed behind me...HAPPY, HAPPY, HAPPY!

The kiddos walking around the Nature Center.  Allyn was really excited about going to see the fish.

Today the kids are back in school.  Allyn was super pumped to be going back and I got to surprise Nolan's class as a mystery reader.  As I started to read his class two books, he made his way to the front of the room and sat in my lap.  It makes me happy that he still loves to be affectionate in front of his friends.  I may have even gotten a hug and kiss on my way out.

Monday, October 5, 2015

Emily Gets Hitched

Ben's little sister got engaged this past May (in Italy...what a dream).   Not one to mess around with a long engagement, they were married in September.  So we packed up the family and made the trek to Denver for a fun wedding weekend.

We hopped in a cab right after school on Thursday to fly out of O'Hare.  And honestly, we had quite possibly the most ridiculous reason for a flight delay ever.  Someone spilled a drink on the incoming flight (that was already delayed) so we had to wait another hour and a half for them to change out the padding on the seats.  So we ended up getting to our hotel around 11 p.m. MT on Thursday night.  The troops were tired. 

Friday morning we ventured out to breakfast at Snooze.  For some reason Ben thought it would be best to hit one on the southwest side of town.  So that was a 2-hour trip, but Allyn ate all of her eggs and some tortilla and Nolan had pancakes and sausage.  So a breakfast win.  Later that afternoon we had a bridal luncheon for Emily.  Allyn and I went and to say she was DONE at that point is an understatement.   She ate nothing but some cupcake icing and fell asleep in the car.  For some reason I have not one single picture of this event.  I think it's because I was tending to a certain grumpy three year old. 

That night we ventured to Evergreen for the reception.  It was a beautiful venue.  Following a brief rehearsal, we headed off to a dinner at 6 p.m.  Again, Allyn fell asleep in the car so no pictures of her.  This dinner was long.  The food was good but Allyn wouldn't eat a thing they had and only had some Ritz crackers I had in my bag.  This would prove to be a crucial learning moment for me.  Kids need to eat especially when they are at high altitudes.   We got back so late that night and crashed. 

The next morning we got up and headed to breakfast.  Allyn was complaining that her head hurt.  Of course, I had packed no medicine.  We were ordering our food (we had just picked her up some Chickfila minis that she promptly ate) and her color was looking totally off and her eyes were heavy.  I got nervous and decided to get her out in the fresh air.  Right when I stepped out the door, she barfed ALL OVER ME (and my only jacket I had packed for the trip).  It was definitely altitude sickness.  She ate more chicken and had some juice and seemed to be recovering for the rest of the day. 
So we went to Red Rocks.  (I know, right?)
That afternoon while Allyn napped, Nolan got to play with some friends of ours from Arkansas. 

That evening we headed back out to Evergreen for pictures early and then the wedding at 6 p.m.  Nolan was the ring bearer, Ben was a groomsman and I was a reader.  Allyn was my date.  Like I mentioned, it was a beautiful venue.  We celebrated and danced and had a grand time.  Of course, it was another LONG evening and Allyn fell asleep for the last two hours of the reception and Nolan was beyond hysterical by the time we got back to our hotel.  But we would do it again for Lala. 

 (Oh em gee.  I packed one pair of dress shoes for the trip.  By the third hour of the third event wearing them, my feet were done.  So thank you TOMS for coming to the rescue).

 Kacy and Mike were there for the celebration. 
And I just had the best time with my date.  Because I seriously almost never saw Ben or Nolan.  (That's Ben standing up in the background taking pictures from the wedding party table.)
And kind of unrelated to the wedding, that may be one of my most favorite dresses I have ever purchased.  Although I may be investing in some Spanx because boy was it snug around the tush and I kept stressing about visible panty line.   
On Sunday we all boarded a (delayed) flight to Chicago to head home.  From there Ben headed back out to Orange County for work.  It was exhausting but we were glad to celebrate Emily and Dave in such a beautiful place for such a special event.  

Sunday, October 4, 2015

That Time I Fell of the Face of the Earth

What can I say, life is busier than normal.  Nolan finished kindergarten, summer rolled around and life got extra crazy, like crazy with crazy sauce on the side.  It was good, but it was also CRAZY.

We started off the summer with Nolan in coach pitch baseball.  Practice on Monday and games on Thursday or Friday nights.  Some of which were not over until after 8 p.m. and that may have happened while Ben was traveling with work. 

We took a trip back to Arkansas to see Ben's family in early June.  Allyn just loves being at Mimi's house.  They may have taken her to Chuck E. Cheese.  She also had roseola while we were there.  She screamed pretty much the entire drive down and ran a very low grade fever.  Fever broke, and BOOM rash.  Childhood illnesses always pop up at such interesting times. 

We went in to get another serial cast for her scoliosis.  And with all of her heart issues they decided to switch her to a TLSO brace until we get all of that figured out.  Talk about a game changer for summer.  SO....

We joined a pool.  It was awesome.  We went up there several times a week beginning in July when we joined.  And we made the most of it until they closed on Labor Day.  Allyn would play in the baby pool and sit in the shade and eat snacks.  Nolan learned how to really swim.  And I got to do a fair amount of relaxing and talking with friends when Ben was there and Nolan had a friend to play with.  The pool may have been the highlight of summer.
We also made a trip downtown to meet friends and do fun touristy stuff.  If you are going to do Chicago, summer is the time to do it.

Ben's company had a night at the Peggy Notebart Museum.  Another fun trip downtown in the summer.

Being out of the cast and in the brace really helped with Allyn's propreoception.  She started walking more and even began to tackle the stairs.  It made me a little nervous but seeing her this happy is totally worth my fear. 

Also, she may be the poster child for waiting for chocolate cake at Portillo's. 

In August, we took a trip to the beach (never again) and someone had her third birthday.  She had a Hello Kitty cake and we had a little party with friends we had met there.  It was her biggest celebration to date.  She had another party on the way home when we stopped to see family outside of Nashville.  Cake and being all about her were high on her list of things she loves.

And then it was time to get back into the swing of things.

That's right.  School.  Nolan is in first grade and has a lot of friends in his class and a great teacher and is really enjoying school this year.  And Allyn started preschool through our school district's early childhood program.  She loves school and tells me every day about how much she likes her teacher and her bus driver.  She started walking independently in school and a lot of the fear she had around her peers has diminished.  School has been a great thing. 

Now that it's fall and we are finding a routine, things are easier.  We will meet with her orthopedic surgeon this month to figure out what to do about her spine: back to casting or continued bracing.  And we will also figure out what to do about her heart in the next few weeks.  We are hoping a heart catheterization will be the route that allows us the fix the ASD but the hole is almost her entire atrial wall and may be too big.  She may also have to much of a pressure gradient and pulmonary hypertension that would make that not possible.  I know she will be in good hands and it will get figured out, I just pray that whatever route we take is not a struggle for her. 

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.