Monday, February 8, 2016

One in One Hundred

This week, February 7 through 14, we observe Congenital Heart Defect Awareness Week.  Did you know that 1 of 100 children is born with a congenital heart defect.  That is a staggering number, but I feel like you really don't hear a lot about congenital heart defects.  Why? Who knows?

Congenital defects can involve the walls of the heart, the valves inside the heart or the arteries and veins around the heart.  Sometimes multiple things are affected.  Sometimes they are simple, they have no symptoms and require no treatment.  Sometimes they are life-threatening and require immediate intervention.
Allyn's heart defects were not discovered until she was two and a half years old.  And we kind of discovered them on a fluke.  She had suspected mitochondrial disease and we did an echocardiogram of her heart as a baseline.  She also had a radiologist reading an x-ray for her scoliosis and he noted an enlarged heart on his report.  Upon review of her echo, it was determined that she had an atrial septal defect (ASD), a hole between the top chambers of her heart, and a patent ductus arteriosis (PDA), a hole that should have closed shortly after birth when her body started pumping more blood to her lungs.

We did multiple echos and MRIs to determine where the holes where, how big they were, if they were causing other problems and what we could do to fix them.  Her ASD was a large and her PDA was small to moderate.  They were causing complications.  Her right side of her heart was very enlarged and because of the extra blood going to her lungs she had developed pulmonary hypertension.  She had a catheterization during which we attempted to close the holes.  Her ASD was too large.  We also discovered some issues with her mitral valve.

On December 16, 2015 my warrior had open heart surgery and became an official member of the Zipper Club.

She is doing so well now.  Her heart was definitely holding her back developmentally.  She is even gaining weight now.  Having something wrong with your baby is scary, but I am so glad this is something we were able to fix.

Looking back, she had symptoms that should have not been overlooked.  By all of her doctors,  And we have seen a lot.  I think because no one heard the classic murmur, the thought of checking her heart was overlooked.  But an ASD the size of her's does not generate the classic murmur sound due to the volume of blood going through.

Some of her symptoms were:

  • Failure to thrive.  She was not gaining weight.  In her first year of life she gained 6 lbs.  Most baby's triple their birth weight.  She did not even double her's.  She ate okay and we did volume transfer studies to see if she was getting enough milk.  She was.  
  • Difficulty feeding.  She would tire while nursing.  Nolan had always nursed like a champion and he would drink until there was no more.  She almost always fell asleep after 10-15 minutes of nursing. 
  • Sweating.  She was sweating all of the time.  When she nursed and when she slept, she would be drenched.  
  • Additionally, she had scoliosis and preauricular pits.  It's not uncommon for children with spinal or ear or kidney abnormalities have heart abnormalities.  
I mentioned all of these things to her doctors.  All of her doctors.  So it really was just gross oversight (and maybe a little negligent) that not until her geneticist in Chicago saw some issues on a muscle biopsy that an ultrasound of her heart was ordered.  

But now I know.  And I can tell you.  If your baby has any of these symptoms.  Or issues with pulse ox readings or rapid breathing or anything else, discuss with your doctor ordering an echocardiogram.  It's easy and a non-invasive.

If you want more information on congenital heart defects you can visit Mended Little Hearts.  And from my heart warrior to you, Happy Congenital Heart Defect Awareness Week.  

Tuesday, January 19, 2016

Open Heart Surgery - Going Home

After six nights in the hospital, Allyn was discharged from Lurie on December 22.  It was great because that Tuesday was also Nolan's last day of school leading up to Christmas break.  So we were all home for Christmas.

We just had to wait (and wait) on all of her discharge papers and medicine.  That took a while.  I know they have to cover all the bases, but once they tell you that you get to take your child home, you are kind of ready to hit the road.  We watched some shows on the ipad.

 Took a couple more walks around the floor....getting a "she's so cute" from all of the nursing staff that saw her.
Changed into our "street" clothes.  

 And hit the road just after lunch.  We made it back to the house in time to see Nolan and Mimi walking back from the bus stop.

Lurie Hospital is amazing.  Dr. Backer is awesome at his job.  The entire cardiology team was phenomenal.  Not once did we feel like they were glossing over her condition or getting her to her very best.

Leaving the hospital, I know how lucky we are.  On so many levels.  We were able to treat this condition.  We are educated enough that we explored every avenue and made informed decisions about our daughter's care.  We have a girl that loves big and has a charisma that pulls everyone in.  Even with her curves and holes, she is the greatest gift and if given the choice, I would choose her again and again.

I know that some how we are meant to bring awareness to this condition and her scoliosis too.  I just don't even know how to begin.  I often feel like I'm missing the boat on spreading awareness of how these things impact her life and all of the warning signs parents should be looking for.  It's a lot to digest.  And where to begin.

But for now, I will just keep soaking Allyn and her sweet smile and request for snuggles in.  Loving the many gifts our family has been given.

Tuesday, January 12, 2016

Open Heart Surgery - Days Four, Five and Six

By the time Allyn got to day four at Lurie, things seemed to be going pretty well.  She was most certainly feeling better.  Her oxygen levels stabilized after a breathing treatment; she had a partially collapsed left lung.  Other than that, her only issues were that her heart rate was still very high and on the echo they noticed more regurgitation on one valve and the other still had some.  But by all outward appearances, she looked just fine.

I was able to head back to the house on Saturday after Ben got to the hospital.  Nolan had his last indoor soccer game of the year.  How cute are these boys?

I hung around for a bit to get Allyn up and moving.  Our nurse was Natalia and she was super sweet.  She involved Allyn a lot in the whole process which seemed to be well received by the little peanut.

 Once she got started on a few activities, I packed up some of my stuff and headed home for real shower, some good food and quality time with the boy.
 I originally thought we would be heading home on Sunday.  That wasn't the case.  Allyn's heart rate was still in the 150s.  Pre-op she was in the 120s.  So we had to do a bunch of tests to see if the doctors could figure out if there was a cause.
 So we hung around Sunday and Monday too.  Our doctor on the floor those days was Dr. Smith-Parrish.  She may be my all time favorite person we had at Lurie.  Talk about a great bedside manner.  You just knew she was doing everything that was best for Allyn but also recognized that we were all really ready to get out of there.
 On Monday I headed back to the suburbs super early in the morning to help with a gingerbread house day at Nolan's school.  In the past week I had only seen him for a bit on Saturday and knew that it would be special for me to surprise him at school.  I left my phone in the car so I have no pictures, but we had a great time for that hour.

Little girl hung out with daddy and did some work.

By Monday night, it was obvious Allyn was back to herself.  She was playing doctor and up and walking around the floor.  
 She was also eating!  And they started talking about discharging her on Tuesday.  They had examined every possible cause for her heart rate to be so high and they couldn't find a cause.  It appeared it was just a post-op thing and they would be watching it and hoping it would come down with time.  They also started her on a blood pressure medicine and kept her on Lasix to see if it could reduce some of the work her heart was doing.
 And it was a good thing they started talking discharge.  Because later on Monday night, Allyn figured out that the buttons on the bed MADE IT MOVE!!!  It was amazing.  Until I locked them.  Fits were thrown and I knew for sure she was officially back to herself.

Monday, January 11, 2016

Open Heart Surgery - Days Two and Three

Days Two and Three were the hardest.  Her heart was fixed, but now she was coming off of all of the good drugs they give you in the operating room.  She still had her morphine pump, but we really couldn't tell a difference if we were giving it to her or not.

They started giving her another drug called toradol that would help more with the muscle pains she was having most likely from having her sternum opened.  We were hoping that this would allow us to take away the morphine.  I knew morphine would add to the constipation and she wasn't eating anything.  Day two our goals were to see if I could get her to eat or nurse and to get her up and moving around.  She still had a line in her arm and her chest tube and her central line and a nose cannula for oxygen.  Just a quick little stroll around the floor was a lot of work.
From my standpoint, day two was the hardest for me as a mom.  She was clingy and I could tell she was tired.  But she was also very restless.  Her oxygen saturation levels kept dropping into the 80s.  But she really wanted that nose cannula off.  And I had gotten maybe and hour and 45 minutes of sleep in the past 30 or so hours.

 So that she could get some sleep, I decided to just hold her and see if she might nurse (she didn't) and use the oxygen mask close to her and see if I could keep the alarm from going off.  She slept for over three hours like this.  She only woke when they had to come in and do the checks.  It was the most sleep she had gotten in the past two days.

We had a great nurse that night who tried to let us get some sleep.  I think her name was Ashley.  I was so thankful for her that night because even an hour of uninterrupted sleep was oh so glorious.  It was also our first night at the hospital without Ben there.

We started off Day Three with a new nurse, Josephine.  She was hilarious.  She called Allyn, "girlfriend."  Allyn was still pretty pissy, but Josephine was doing her very best to lift her spirits.  She was also great an answering all of our questions, because at this point we had a lot.  We wanted to know what we needed to do to get out of this place, what meds she was getting, was being this wiped out normal, etc.

Santa also came by during our visit.  Allyn still wanted no part of Santa.  She looked away.  He gave her a stuffed toy cat.

 On Day Three, it was my goal to get Allyn up and walking.  (I think this is also the day that the Foley catheter came out.)  We took her around the floor to see the babies on the other side of the unit...tiny, tiny babies.  This was the highlight of her every day.  The girl loves a baby and there are a lot of them over there.  A lot of them are on breathing tubes and covered in cords and you can't see them but some are up and playing or being fed and she just loved being able to see those sweet babies.
 After a walk around the floor, we tried to get her standing.  We did get her on her feet.  She wouldn't take any steps, but I figured this was a good start.  I wanted her to feel confident that even though she was in pain she could still start working to get her mobility back.  I was hoping by moving her body around she would start to feel better.  But I guess it was too soon.  She was super tired and crabby.  But it was a start.
 On Day Three she also got a terrible case of contact dermatitis where the tubes from the nose cannula were rubbing on her face, ears and neck.  It was red and actually oozing stuff.  She was actually looking worse all over, her oxygen wasn't stable, she wasn't pooping or eating, and now she had this terrible rash.  I really just felt awful for her.
 But as the day came to an end and we got closer to bedtime, she started to come around to feeling (just a tiny bit) better.  She was able to even eat a couple of bites of spaghetti and a little bit of ice cream at dinner time.

At this point, I was kind of starting to think that we might actually get out of the hospital in a couple of days.  We finished up dinner and said goodbye so Ben could go home for the night to hang out with Nolan.

Wednesday, January 6, 2016

Open Heart Surgery - Day One

I wanted to come back and elaborate on Allyn's time at Lurie.  The whole is experience was more calm than I anticipated.  The staff there was amazing.  Amazing.  I cannot say enough things about them.  Seriously, I could probably write a series of blog posts about every single person that worked with us while we were there.

We arrived at Lurie first thing in the morning.  Early commutes into the city usually prove uneventful, and this trip was no exception.  Right in to the heart of downtown, easy-peasy.  We were given our badges at the front desk.  From there we headed up to the 7th floor.  It was probably around 6:30 a.m. by the time we were all situated in the pre-op room.

Vitals were checked and things were loaded into the computer.  We talked about drug reactions and how she has done post-op for other surgeries.  As a parent, I have committed to remembering pretty much everything dealing with any surgery she has ever had.  Thankfully, I have a great memory and can recall every major event and most of the mundane doctor's appointments too.  If I wasn't great at it, I would probably make a book to take with me.  And at some point down the road, when there are too many things to keep track of mentally, I probably will.  Our anesthesia team was so very kind.  The doctor, who's name I don't remember, was very reassuring.  He had recently had a child that was admitted due to seizures due to an infection.  As a parent, it's nice to know that your doctor has children and relates a little bit to the anxiety you may feel during a situation like this.  But honestly, I wasn't that anxious.  I kept telling Ben I knew this is what needed to happen.  We had exhausted all other possibilities for repair and her heart had to be repaired.  It was a weird thing to not be totally freaked out about this.  Because I'm the person that freaks out when the dishwasher is loaded incorrectly (yes, you can load a dishwasher incorrectly).

Once the vitals were done and all of the pre-op questions asked and answered, we waited.
It was a pretty short wait.  We cleaned her one more time with some sort of special pre-op wipe, wrapped her in a blanket and headed back toward the surgery area.  Once we reached the locked doors, I handed her off to the anesthesia team and they took her away.  I did get a little sad at this point; not because I was uncertain of how the procedure would go, but because I knew that when I saw her again she would be forever different.

Ben and I went to the 11th floor to grab some breakfast.  I also talked to my sister who had just gotten out of rehab.  I fear it may be the last time I ever do talk to her.  We finished our food and headed up to the 15th floor to wait on the surgery team to give us updates.  The nurse practitioner the day we were waiting was Holly.  She just had an ease about the way she delivered our updates.  She was professional and compassionate.  Again, I could go on and on about the staff.  We got hourly updates for the first three hours.  And at the hour five mark, her surgeon, Dr. Backer came in.  We were told to expect a four to six hour surgery.  And here he was right at the five hour mark from the time she went back.  

The surgery went as planned.  Her atrial septal defect was about 20 millimeters.  To give you some perspective, it was roughly the size of a quarter.  Dr. Backer expressed his opinion that the catheter closure would have not be successful.  Her margins were non-existent and the occluder would have put pressure on her aorta.  It was in that very moment that I knew God had very carefully walked us through this journey.  Not allowing us to do more harm than good.  He said she was waiting in her room and we could go back because she was asking for me.  It was odd in the way they said it.  Like maybe most kids don't ask for their parents as soon as the breathing tube comes out.  But she was very aware and wanted me right there with her.  I was happy to oblige.  
We spent the next several hours just watching her.  There are a lot of tests that happen post-op.  Labs every couple of hours.  Vitals every hours.  Not a lot of sleep on anyone's part.  Once Allyn's meds started to wear off from her surgery, things were getting a little tougher.  She was restless. 

There was a central line and an arterial line.  She had a chest tube and was getting oxygen.  She also had on a pulseox sensor and a blood pressure cuff.  Moving around her was not an easy task.  She had a morphine pump and they encouraged us to push the button hourly, but we could push it as frequently as every 8 or 9 minutes.  

The one thing I know with certainty now about this sweet child, is that she is a WARRIOR.  She wasn't pitiful or weepy.  She just wanted us near.  But you could sense this girl's fight.  Allyn has this thing about her personality; she is adorable.  She pulls you in and wraps you up in her charisma.  So it was quite the change for us to see that she is also equally strong.  

That first night was rough.  We were on two hour checks.  But checks the first night took about 30 minutes.  So by the time we got her back to sleep, and then we got back to sleep, the nurses were back in within the hour.  And Allyn wanted me close.  I spent part of the night perched on her bed and the rest of the night trying to maintain physical contact with her while dozing in the chair.  No easy feat.  

But her heart was repaired.  Exhaustion couldn't stop us now.

Sunday, December 20, 2015

Day Five

Day Five at Lurie.  Today has been a better day.  She is up and walking.  Before the surgery, I was hopeful we would be heading home today.  But her heart rate has been high so we are trying to figure out the cause.  Here's to hoping tomorrow is discharge day.

Peek a boo with our Elsa blanket.

Rocking the pigtails and eating some dinner.

Friday, December 18, 2015

Opening Up

On Wednesday, December 16 Allyn underwent open heart surgery at Lurie.  Going into it, I was not afraid or unsure (maybe a bit anxious).  We left the house at 5:15 am for a 6:30 call time.  She went back at 7:30 am.  At 12:30 she was waiting in the room for us.  Her heart was fixed.

We learned she had a 20 mm ASD with very thin margins; the occluder would have most likely failed even if we tried.  And it would have been close to her aorta; no good.  Her PDA was about 2 mm and double ligatured.  The valves had mild regurgitation.  It is all of her cardiology team's opinion that they will improve when the volume of blood flow through her heart decreases and the size of her heart also decreases.


Day 1 was okay.  She slept a lot.

Night 1 and Day 2 were rough.  She was in a lot of pain.  And I was exhausted.  Things seemed to be best when she was sleeping.  But for me, it was rough because she wanted me touching her.

Today her fluids have been high, her oxygen is low, she is running fever off and on and she is totally over all of the tubes and cords and machines. She still hasn't eaten.  It's pitiful.  I just want her to feel better.

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.