Monday, May 16, 2016

What's Your Voice?

Finding something that I WANT to write about lately has been tough.  I love my children, but a "mommy" blog.  Meh.  I love food, but everything I make is from recipe or I do not care to recreate it.  I love clothes, but all I wear is gym clothes or things that are comfortable and who wants to read about that.  I work out, but I have no plan to show you or product to shill.  My life is pretty average.  Except that it's not.



I have a voice, different from yours.  My voice is as my children's advocate.  And they are anything but average.  And I don't mean that in a "special snowflake" kind of way.  My firstborn in stubborn and strong and rocks my world on a daily basis.  He is typical, but parenting him is not without its challenges.  I think his challenges are those that 95% of parents deal with.  We push through his challenges and keep loving.  I think for him, that really is the most we can do.

I often feel terrible for not thinking my children are equal.  But they are not.  I don't love one more than the other.  But right now, Allyn impacts my life more.  She just does.  She is younger and needs me more and she constantly has something going on that I have to really be there for.  She is still not terribly mobile.  So I feel a ton of guilt being with her more, talking about her, and life being centered around Allyn.  But then I realized...THAT IS MY VOICE.

I am the parent of a special needs child.  I hate saying it.  I hate hearing it.  I want her to be special.  But honestly, I don't want her needs to be special.  I want a child that is just like every other kid out there.  Performs on a average level.  But that's not who she is.  And so that is not the parent I get to be.  I had a friend once that said I was the person she was most likely to talk religious stuff to.  And I thought, "NO!"  I want to be the fun friend; the friend you ask questions about shoes or outfits, the friend you go grab a drink with.  But I'm not that friend anymore.  My life is not about these trivial things, and I have to stop pretending that is who I am.

I have become a mama bear.  I chime in on support pages about treatment.  I tell parents there is more they can do.  I want them to find answers for their children.  I want their children to have every possibility at success.

And Allyn, well, she is AMAZING.  I want to vomit when people say some child is destined for "great things."  Like every single kid out there is going to change the entire world on some radical scale.  And people really believe it.  My pessimistic soul thinks otherwise.  But then I see this child.  And in my gut, I know that she is special.  And she will be great.  And she will change the world.

And it TERRIFIES me!  I have been given a special soul to care for and nurture.  Her body is slight and not without it's many issues.  But her spirit is big.  She is magnetic.  She has overcome so much and done it without losing a sweetness and optimism that you could only find in the most pure of souls.  And I realize that she is THREE, but it's a special thing.  It really so perfect that words could not accurately describe this girl.

February was Heart Month (or whatever you want to call it).  And next month in June, we celebrate Scoliosis Awareness Month.  Scoliosis Awareness is still so near and dear to my heart.  It's where we began this roller coaster ride.  And in terms of awareness about what "having scoliosis" really means, I don't think people get it.  

So that's where this voice comes in.  Get ready for some obnoxious posts about the spine.  We need to be talking about it.  We need to be forcing early diagnosis.  And we need to be researching better treatment methods.  

Monday, May 9, 2016

A Birthday Party Fit For A Seven Year Old

This past Friday, we celebrated Nolan's birthday.  His school district had a half day and so we decided for late afternoon party of Friday with THE GAME TRUCK.  If you have not heard about the game truck, look it up.  It was exactly what he wanted.  Pretty much what every seven-year old loves.  So we invited a "few" of his friends and they had a blast playing video games. 


 I love that Nolan has some super sweet friends.  These boys are amazing.  They are kind and thoughtful.  And most of them are also VERY SPORTY. 
 I thought for sure they would want to spend every moment on the truck.  Well, about an hour into the party a group of about seven of them hopped off to play soccer in the yard.  Color me shocked that Nolan was one of the kids that chose an outdoor activity involving physical exertion over Minecraft. 
 I even got Allyn on the truck for a little bit.  But she was not loving the chaos that was sixteen boys...and two girls. 
There was pizza and Gatorade and cake and CHAOS.  But it was fun to have so many friends show up to celebrate with Nolan.  We are so fortunate to have made such amazing friends through school and soccer (and other sports too) and I'm looking forward for many more celebrations with this fun group. 

Thursday, April 28, 2016

Happy Seventh!!!

Today, Nolan turns seven.  It's quite mind-blowing when you really think about it.  Seven whole years of having him around.  SEVEN!?!?!?!?!  From the moment he arrived, he was a world shaker.  Not 10 minutes after he was born, he was awake and alert and wanted to know what was going on.  And that hasn't changed.  Laid back is never a description that would be used for our first born.


This is about 20 minutes after his delivery.  He hadn't even been officially cleaned off yet and he was so alert. 
 He is strong and strong-willed.  Ben and I joke that he is a lot like me.  No is not a word that either of us likes to hear and we are both super willful and usually push (hard) to get what we want.  (It goes without saying, we are both Tauruses).  But he is also so very sweet.  He loves to spend time as an entire family but loves his one on one time (usually with mom) too.  I think that's been the hardest thing about adding Allyn to the mix; she is a very needy child (not in the sense of emotionally, but physically).  He is an awesome brother to his sweet little sister.  I know that he sacrifices a lot for her, sometimes by choice and sometimes by necessity.  I have no doubt that she has made him one of the most compassionate loving kids around and their love has made him quite the warrior for her.  (They do still fight A LOT).
Nolan's First Birthday
 He is a handsome "little" dude.  I see a lot of Ben in his eyes and hair.  And a lot of me in his nose, mouth and chin.  Probably the thing most people notice about him is that he is not little at all.  I really think he will be bigger than Ben.  Right now he is 54" tall and weighs somewhere around 78 lbs.  He wears a size 8 (just barely) or 10 shirt and pants and a size 4.5 shoe.  Seriously.  It saddens me to think that he will probably be taller than me when he is ten years old, and I'm taller than the average female by several inches.

And he is so smart.  He blows us away with the things he remembers and the way he solves problems.  But like his momma, he gets frustrated when things don't come easy because so many things do.  That's something we have been working on.  Frustration is okay; giving up is not.

Right now he is playing sports: baseball, basketball, and soccer and also does Lego Club after school.  He was swimming every week for a while (almost two years), but stopped that in April.  He loves to play chase or tag, and he is absolutely obsessed with wresting.  He also loves electronics (what kid doesn't?).  And he has made a lot of friends in the "neighborhood" and recently they have just been playing in the yard after school.  When his friends describe him, the word most often used is "silly."  He can definitely ham it up for attention.  Which is funny because both Ben and I tend to shy away from a lot of social attention. But I love that he is different from us in that way.  

After school today. 
So HAPPY SEVENTH to the one and only Nola-mite.  One of the most incredible kids around.  So happy I get to call him mine.

Monday, March 14, 2016

Puzzle Pieces - Tetrasomy i(5p) Mosaicism

For years, I have suspected there was more to Allyn than the sum of her diagnoses.  Doctor after doctor.  Test after test.  And it turned up nothing.  One thing would be suspicious, but overall, things were really just inconclusive.  But as her mother, I saw the delays and her spine and then her heart and that she was super tiny and skin changes and preauricular pits and thought to myself, "There is no way there isn't some common thread here."  But no connecting medical diagnosis after no connecting medical diagnosis proved me wrong.

Turns out there is a common thread.

Tetrasomy i(5p) Mosaicism.

I heard back from her awesome geneticist last week.  The results of her skin biopsy that was collected back in December were in.  She has a rare genetic condition.  How rare?  Really.  He said there were only a few documented cases.  I suspect there are a lot more actual cases because it took this long for me to push and push for test after test and bring up issue after issue until we landed at the right place.  And honestly, most parents just aren't as insane as that.

But what does it change?  Not much.  We had already identified scoliosis, heart defects, growth issues, digestive issues, speech delays, motor delays, skin issues, and probably a lot more that I am forgetting.  She already sees many doctors and maxes out on therapies at school and through private facilities.  The only thing that all other identified patients exhibited that she has not are seizures.  It makes me nervous to think about it because those are a real game changer.  (That being said like everything else isn't...ha).  But managing life for a child with seizures is complex and I'm fine with our current level of complexity.

It's nice to have a diagnosis, but it doesn't change a thing about this amazing girl.


She loves her school.  (She also loved that bottle of sparkles),  I can't say enough about her school and all of her amazing teachers.  I was so worried last year about how she was going to adjust.  And I know it's been hard for her, but watching her learn and make those connections with someone who isn't mom or dad or Nolan has been phenomenal.



She is seriously the most adorable child I have ever seen.  Yes, I know I have a mother's bias.  But she is so animated and girly and loves to dress up and accessorize and it just makes me happy.  God knew this is one of my strange loves.  I have always loved fashiony stuff; I would watch Style with Elsa Klensch when I was in elementary school at my Mema's house.  And watching her choose outfits (and sometimes even shut down my choices) makes my heart all warm.

(As an aside, if you see me regularly and think "I only ever see you in gym clothes....or pajamas."  Well, it is more about practicality at this point.  I still love pretty clothes; I just can't justify buying them when I don't have a job earning an income and I wouldn't want to just let stuff sit in my closet.)



And those pigtails.  It's just too much.  At school they had to send home Valentine's hearts with compliments.  Most of her's were "I like your hair."  She also got "I like the way you dance during Move and Groove."  And "You are good at coloring."  I'm still trying to figure out how to do a French braid. Never ever learned.  She is still super wiggly and her hair is fine, but I'm sure one day before she doesn't want me to fix her hair anymore I will figure it out.


She loves her babies.  Really all babies:  doll or human.  I pray that one day she will know the joy of being a mommy.  That's one of those things that terrifies me.  What if she can't have her own babies and what if she isn't capable of caring for a child?  I know God knows these answers and I hope that she gets to watch her babies do all of the things I love watching mine do.  Her heart is so big and she is such a nurturer.


She also is quite the helper in the kitchen.  (Here she is "helping" make whipped cream).  She loves to bake and anytime there is something that involves pouring or mixing, she is on top of it.  


And she LOVES her brother (and his messy room...this was after Nolan and Ben got back from a ski trip to Colorado, thus all of the clothing all over the floor).  I know she was blessed with a strong-willed, big-hearted (and traditionally terrorizing) big brother in Nolan.  She loves to wake him up every morning and give him kisses and hugs before bed at night.  They can finally play together and when I hear the giggles, I know they were created for each other.  And that makes me so insanely happy.  

So we have this diagnosis.  And it really doesn't change anything.  I did find a couple of blogs/social media pages of a couple of other kiddos with the same diagnosis. I reached out, but didn't hear back.  Which is a little disheartening, but you never know where they are in the journey.  I just hope in the coming weeks, her geneticist can find the complete research papers and let us know if there is more that we need to be doing.  

In the meantime, I'll just continue to soak up all of her preciousness.  

(And kind of related, we saw her orthopedic doctor a couple of weeks ago.  Now that her heart is repaired and her sternum has healed, she will go back to serial casting next week.  Fingers crossed that will a little bit of growth she can see some positive results from casting and get her thoracic curve to a more manageable place and we can delay surgery for a long long time.)

Thursday, February 18, 2016

Those Aren't "SEQUENCE" on Your Dress

And something else that drives me insane. 

If I had a dollar for every time I have seen someone use the word "sequence" to describe something sparkly attached to an item of clothing instead of SEQUINS, I would have enough to take to the bank and get a benjamin, for sure. 

But on to the bigger thing....

Last week, I was browsing some social media and saw a link to an article on a magazine site about breastfeeding.  Specifically, breastfeeding past 12 months of age.  And I took the bait.  I clicked on the comments.  #why

Both of my children were EXCLUSIVELY breastfeed for the first six months of life.  No formula.  No solid foods.  #nosleepformama  It worked for us.  I was staying home.  My mother nursed me so I didn't have some weird stigma about it.  I knew breastmilk was, by all accounts, superior to formula.  And I could do it; so I did.  And then we introduced food, but they still nursed.  And Nolan was so unwillingly weaned when he was twenty months old because I wanted to get pregnant but wasn't having any luck because my prolactin levels were through the roof.  I don't know how much longer he would have nursed.  But I know, one day, just like that he would have stopped.  Because that's what kids do.  They stop nursing when they are ready. 

Now, little girl is a different story.  Allyn is three and a half.  And guess what?  She still nurses.  Usually once a day.  Maybe twice.  While she was in the hospital for open heart surgery she didn't breastfeed one time.  Not one.  And I thought we were done.  (Can I get an amen?)  But when we got home the second night she asked to nurse.  Fortunately, there was still milk to be had.  And now she just nurses at night.  And sometimes in the morning. 

Moving back to that story with all of those comments. 

So many people said breastfeeding past 12 months is unnatural or gross.  Once your child can ask for food, he should be eating food and not at the boob.  All of that breastfeeding hate made me stabby.  I still nurse my daughter and my son nursed well past twelve months.  And nothing about it was gross.  It's not like at 12 months they suddenly passed some built-in requirement that they didn't need breastmilk anymore.  And those times when they could ask for it and they would settle into your arms are by far some of the sweetest memories of my children. 

 
 So there's my view of my three-year old nursing.  I can't see one thing about that gross or inappropriate.  And you can't even see my nipple. 

What's crazy about nursing is that it can be discreetly.  You never have to see a woman's breast.  Most breastfeeding mom's don't want you do. 

But then jerks go and make a big stink about people nursing in public.  And honestly, that just pisses us off.  News flash.  We aren't going to stop nursing our kids.  We know it's good and right.  And the real extremists will stage a nurse in.  And then everyone is up in arms. 

Then the whole should you past 12 months? I say yes.  If you want to.  And if being a human milk factory isn't your jam past that first year of life, then stop.  It's cool.  People will chime in that if your child asked for chocolate cake, would you give it to him? So why nurse him when he is older when he asks; when he CAN ask?  No I would not give my child cake every time he asked.  (Probably just 70% of the time.)  But here's the difference.  Breastmilk is like a superpacked vitamin fortified totally organic (I think) tailored to your kid drink.  I hear it's better than kale.  Manmade foods are not.  And let's be honest.  Neither one of my kids is asking for a whole lot of veggies.  So for as long as they are benefiting from breastfeeding and still want to, I will continue to nurse.  Because one day they will stop.  If you have a healthy breastfeeding relationship with your child, one day (one sad sad day) she will stop. 

I have a very good friend who never nursed her baby.  Like ever.  So we are on opposite ends of the spectrum when it comes to breastfeeding.  We didn't make the same choice for our babies, but we both did what was right for us.  And we kept it a judgement free zone.  Do I wish she would have tried nursing her son?  YES.  Because I know nutritionally breastmilk is better.  Does she probably think I'm a little crazy for nursing a preschooler?  Probably yes.  Most people do.  But we have never picked apart the decision that we each made.  Our children are loved and thriving and healthy(ish). 

So while I didn't comment on that thread, I did get my peace here.  Nurse on mamas.  Or don't.  It's up to you.

And for the love of all things, everywhere...,.,IT'S SEQUINS!

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.