Saturday, January 3, 2015

Lyla's Heart Surgery - Part One

Lyla’s Heart Surgery – PART 1

Lyla and I woke up at 5:30 AM and headed over to Boston Children’s Hospital on Wednesday, January 15, 2014.  Lyla was scheduled for a cardiac catherization to determine if she would be having open heart surgery the next day.  Lyla’s Pulmonary Hypertension was severe enough that she had been told 3 times prior that she would not survive surgery. It was our Hope and Prayers that this time things would be different.  THIS TIME – Her Beautiful Heart would finally be repaired!!!!

We entered the cardiac cath lab and signed in.  We were quickly called back to a room.  The anesthesia team came in and said “we will be the same team if Lyla has surgery tomorrow so we will just have you sign both consents now, 1 for the catherization and 1 for the repair”.  I thought GREAT!!!  That would be a step closer to Heart Surgery!!   It had to be a good sign, right? 

I held her as I always did while the sleepy juice took effect.  Sweet princess was off to sleep in no time.  I kissed her head and told her to be a good girl.  I whispered to her that this was the big one – this was her chance to finally get better.  Kissed her some more and told her GOD would not leave her.  They rolled her off and I went to the waiting room.

My Aunt Ann came in shortly to wait with me.  We talked and talked and before we knew it they said she was out of the cath lab and we could see her real soon.  Dr. Marx came in and told us that she did GREAT!!  Of course she did I thought – she doesn’t know any other way then “GREAT”!  Dr. Marx said most of her numbers in the cath lab improved and they were actually shocked.  He didn’t expect these results.  Again, that’s just LYLA!!  SHOCKING!!!  He said her surgery would still be very high risk and he would need to meet with Dr. Mullen (PH Specialist) and Dr. Pigula (Surgeon) before making any determination.  He said they would have an answer for me later in the day.  PERFECT!!!
Lyla recovered from her cath like a Rock Star.  After a cardiac catherization the patient is supposed to lay flat for 6 hours!!!  HA!!!  Lyla had proved for the third time that lying flat for 2 hours is more than enough.  She is something!!!!

Lyla was admitted and I realized we never checked out of the family housing room we had been so Blessed to stay in.  So I called and told them the situation.  They were so good about it and said I could come in the next day and check out.  PERFECT!!!

We played and ate dinner in Lyla’s room on 8 East.  Lyla’s room was in the new wing of 8 EAST.  Pretty much the RITZ of all hospital rooms.  Lyla had her own Fridge, private bathroom, HUGE flat screen TV and a beautiful view of Boston. 

It was about 7pm and Dr. Pigula knocked on the door.  MY HEART STOPPED!!!  Here it was!!!  This was it!!!  What in the world was he going to say???  I started crying immediately I think.  He started to go over the cath results.  I politely (I hope) interrupted him and said “please, I just need to know if she will be having surgery tomorrow”.  He said “okay, right to the point, Yes, Lyla is my first case in the OR tomorrow”! 

If I thought my heart stopped a few minutes prior, well it was now beating a million times a minute and my sweet girl had absolutely no idea what was going on.  She was just smiling and trying to pinch Dr. Pigula.  His words meant nothing to her.  He was just another visitor she wanted to interact with.

Now, ME?  OH MY!!!!  Talk about feeling like being hit by a train.  More like 12 trains I think.    I had waited to hear those words for a year!!!  A year of 3 heart surgery admissions and Lyla was told “NO” all three times.  We were told she would not survive.  One Charming Surgeon said “do you want to plan her funeral in a few days”.  I’m still mad at that Doctor for saying that to Dave and me, because it was those words running around in my head after Dr. Pigula left. 

Could this be my last 12 hours with this beautiful precious treasure?????
What if that Jerk (sorry) Doctor was right????  What if this Doctor was wrong??????

Oh yes, I was knocking on the door of insanity and I was strongly considering an escape.
I talked to my husband and Uncle Mike.  Both of my favorite men reminded me that Lyla deserves this repair to live the Best Quality of LIFE Possible!!!   Something they said they knew I obviously wanted for her.  They were right – yes I did but “WHAT IF?”  Both men refused to even go there. 

So I took some deep breaths and played with my favorite 4 year old Princess in the whole world.  We played until she passed out.  Her head was on my chest and her Princess Book was snug in her hand.  Then I cried, cried like a baby.  Trying so hard to keep it in and not wake her up, she needed to be strong for the next few days.  I PRAYED.  Praying Like I had never ever PRAYED before.  Begging, Pleading, and Screaming to GOD in my head that I needed help – help with Faith – Faith to trust this was the right thing.  I prayed myself right to sleep with my angel on my chest!!  PERFECT!!!!!

Lyla woke up around 2 am.  She never wakes up.  But I figured this was yet another gift, an opportunity to spend some more time with this warrior I was beyond blessed to call my daughter.  We played all kinds of games, we laughed, we sang songs, we danced, we hugged, we gave each other lots of kisses and we smiled LOTS!!!  It was so FUN!!!  I refused to ruin it!!!  We must have fallen asleep again at 4:30.  Then the floor nurse came and woke us up bright and early and said “they are ready for her in the OR”.

WHAT?????  Wait!!!!!!  Not, yet!!!!

But there was no time.  I had to get our things together quickly because they were starting to wheel her out of the room.  WHOA!!!  I was thinking “PLEASE SLOW DOWN”!!! 
I ran to catch up.  That Princess was SMILING from ear to ear.  Waving to everyone we passed.  Lyla loves the elevator so she was so excited to see that was where we were headed.  They pushed that big bed in there and without hesitation Lyla’s arms went up in the air anticipating the ride.  We all laughed!!!!  I realized what a Blessing it was that my sweet girl had no idea what was going on.  Or what she was about to endure.  But with that also comes the realization that I was the one making this decision for her and questioning how fair that was??  She didn’t have a choice!! 

We entered the OR waiting bay and BAM!!!!  OH MY!!!!  The floor nurses kissed Lyla and left.  Then all these surgical people came in.  They started her sleepy meds.  She was touching everyone, showing them her shining infectious smile.  Lyla won them all over while her Mom was hiding behind her crying uncontrollably.  I was hugging her from behind, just sobbing.  I tried so hard to be tough.  She was the toughest person I had ever met and I was a weak mess.  This I realized wasn’t fair at all but I couldn’t get control.  All these people were talking to me, talking to Lyla; I had no idea what any one was saying.  All I could think of was


Why did I sign that damn consent yesterday???  Why???  I sure as heck wouldn’t sign that stupid thing at that point.  NO WAY!!!

I realized Lyla was starting to get very sleepy and I was holding her up with our hug.  

Don’t go to sleep!!!!  
Please DON’T!!!!!!  
Mommy isn’t ready!!!!  
I didn’t have enough time!!!!  

I was holding her so tight!!!  Kissing her head and looking at her admiring how incredible beautiful she was.  I didn’t want that moment to end.  I didn’t want to let her go – EVER!!!  But it was time!!!!

The surgical team helped me off the bed and laid that beautiful beast of a baby down.  I held on to the rail like it was all I had.  I wouldn’t let them take her.  I started screaming like a crazy lunatic.  Inside my head I was telling myself to calm down and I was actually embarrassed how I was acting.  I was telling myself that I was not in a movie and that this was real life.  

I just kept yelling “NO”, 
“I’m not sure this is the right thing to do”, 
“Please don’t take her”!!  

Oh it was something to witness I am sure.  I still can’t believe I couldn’t grasp some kind of control.  I assume I wasn’t the first person to act like this because I had two nurses, one on each side of me trying to calm me down.  I didn’t pay much attention to them at first.  As a matter of fact I noticed a small medical person on Lyla’s right side.  It was my plan to take her out, rip the IV out, pick up Lyla and run.  Thank GOD I must have realized that was not a very reliable plan. 

Just like that – I couldn’t see her anymore.  Was that the last time I would see that most incredible child?

Then I couldn’t breathe.  Not at all.  Those two nurses were still with me.  Saying “breathe”, “breathe”!!  Oh my – yes, yes, I needed to breathe.  I was sitting with my head down just focusing on each breath.  When I pulled myself together enough to sit up.  I realized again, she was gone.   So, yep, it started again.  “Breathe Summer” both nurses were saying.  Back down I went.  Then one of those sweet nurses said “she needs you to be strong Summer”

Now, I had heard this a million times.  It’s a standard line even in a movie!!  Well, it’s a good line!!!  I needed to hear it!!!  Why was I being so flipping selfish?????  While my beautiful daughter was most likely about to have the biggest fight of her life, I was working on my breathing????  Um, NO – Not acceptable.  YES, I had to be STRONG!!!!!!

I got it together.  The tears didn’t stop but I was back in the real world.  The world where Lyla was finally having the surgery she so desperately deserved!!! 
The nurses wanted me to sit for a bit, I think to make sure I was sane.  I proved that I was and they said they would update me every hour with Lyla’s progress.  They would explain what was going on in the OR.  I asked them to please only tell me she is doing fabulous and I expressed I did not want to know the details.  Unlike most people, I am not big on details. 

I remembered I had to move our stuff out of the family housing.  It was a few blocks away.  I asked the nurses if they thought that would be okay.  They both agreed the fresh air and something to keep my mind busy was a great idea.  One nurse assured me the actual surgery wouldn’t start for some time.  The prep for this surgery was lengthy.  So off I went.  I kept telling GOD that Lyla was definitely way too nasty for Heaven.  It was important that he knew that I thought. 

I walked out of the hospital and PRAYED like crazy that I would never leave the hospital again without her!!!

I called Dave on the walk to Family Housing.  I heard his voice and lost it a bit again.  As always, he was strong and encouraging.  Pretty sure he promised me she would be just fine.  This helped!!  Not that I thought he really knew but that he truly BELIEVED and had FAITH she would be just fine!!!  That worked for me.  The tears continued to stream but I was on a mission to get our stuff out of the room as quick as humanly possible and back to the hospital. 

I packed everything.  Stacked all our bags on the stroller. Strapped two bags across my chest and headed towards the elevator.  The stroller was not moving with much ease.  I figured it must be all the weight.  On the elevator I was wondering if Lyla felt anything.  I was Praying she wasn’t feeling a thing.  Praying she had the Prayer shawl right next to her that Tina’s Mom had made!!  I tried to remember if I told the team she needed that touching her.  I was confident I did!!! 

I got off the elevator and was using all my strength to push that stroller.  I rearranged all the bags and tried again.  NOPE!!  It was like moving a mountain.  I took notice of the two flat tires.  Oh boy!!  That was not helpful.  So I only had one choice, Push and Push hard.  I was sweating, crying and just a big hot mess.  I couldn’t believe it – why me I thought?????  There I was doing it again – SELFISH!!!!!  Beyond SELFISH!!!!  Wake up Summer – Your daughter is having High Risk Open Heart Surgery and I am asking why me?????  WHAT WAS WRONG WITH ME!!!!!!!  I had completely lost all sense of reality obviously.  If I couldn’t push this stupid stroller and get back to my daughter in record time, I didn’t deserve to be her mother.  That was my pep talk to myself.  It worked.  It worked so well, I pushed that Mountain 3 blocks past the hospital. HA!!!  

When I realized I should have made it to the hospital by that time, I asked someone
“where is children’s”?  The lady looked like she saw a ghost!!  Oh yes I thought.  I was in rare form and now I’m scaring people.  She asked “are you okay?”  I assured her I was fine but needed to get to the hospital.  She asked if she could go with me.  I thanked her but told her I just wanted to get to my daughter.  She told me the hospital was 3 blocks behind us.  “Oh” I said.  I thanked her again and took off.  

Finally I was in the elevator on the way to the Cardiac Intensive Care where I would leave all this stupid stuff.  I checked in with the ladies at that front desk and made sure that I could leave it until Lyla had a room.  They were so nice and obviously very aware that I was struggling a bit and asked if I wanted to sit down.  I said “no thank you, I just need to get to the surgery waiting room”.  The one lady said “oh wait let’s put your name on your things”.  I turned around and said “honestly, anyone can take it”!  They laughed and so did I. 

I entered the waiting room and found a seat.  I received an update.  Lyla was doing Fabulous.  I Praised Jesus for about 15 minutes and then the hospital chaplain sat next to me and asked if I would like her to pray for LYLA!!!  YES!!!  YES PLEASE!!!!!!!  So that’s what she did!!  She prayed.  I remember hanging on every word that left her mouth but I can’t remember what she said now to save my life.  Isn’t that strange?  Those words were holding me together and now I don’t have a clue what she was saying.  I know I needed to hear those mystery words and I know I found Peace in the way she delivered each one.  I thanked her so much and really didn’t want her to leave but I knew she had other families to visit with. 

So I lost it again for a bit.  Praying and Begging Mary to hold Lyla tight until they let me hold her again. 

Then I checked Facebook.  I wouldn’t have believed if you had told me fb could be a blessing but my goodness I swear it was.  SO MANY PEOPLE PRAYING FOR LYLA!!!!  Wishing her well!!!!!  How could she not come out of this surgery better than ever with so many people – all over the world – pulling for her?  Well, of course I lost it again!!!  I knew Lyla was special but so did all of these people!!!!  Everyone LOVED her!!!!  WOW!!!  Every comment made me stronger – knowing it was helping LYLA be stronger.  It was so Awesome!!!! God would most definitely have to Answer all of these Amazing Prayers for Lyla!!!  HE JUST HAD TO!!!!

I received 2 more updates that Lyla was doing Fabulous.

The fourth update was much more.  The nurse said “Lyla is doing fabulous and 


Okay, Yes, I wanted that detail.  WOW!!!  I can’t believe the power of those words!!!!!  I was so glad the nurse didn’t listen to me, I was so grateful she said those words!!!  I felt my entire body relax.  I think my eyes might have popped out of my head at the realization of what those words really meant.  She DID IT!!!!!  She Survived her REPAIR!!!!!!!!!  WOW!!!!!  WOW!!!!!  WOW!!!!!!  Mary did not leave her!!!!  LYLA WAS AN ABSOLUTE MIRACLE!!!!!!

So, what should I do???  Of course, I lost it!!!  The BIG ONE!!!  The couple across from me came over to me and said “good news?” and I barely spit out “the best news” and they sat on each side of me.  Put their arms around me and we thanked GOD as a group.  I have no idea who they were.  No idea why they were in the waiting room but my goodness I was grateful to have them with me.  I never saw them again after that thanking GOD group hug.  But I Pray for them and Thank God for them every night!!!!

The next update was that Lyla was doing fabulous and she would be in the ICU in an hour. 

The hours that seemed like months all of a sudden seemed like seconds. 

That hour took FOREVER!!!  I think I called the CICU 4 times in that hour to see if I could see her.  They keep telling me they needed a few more minutes. 
Then, a nurse called me!!!!  She said I could come back!!!  I entered the CICU and held my breath.  Realizing I was about to see that beautiful Miracle!!!!  WHOA!!!  I didn’t look in the rooms I passed to get to Lyla, I didn’t want to see.  I stopped outside the glass enclosed room and saw her.  Lyla looked so tiny, so helpless, so not her.  In that big bed was a little lifeless child attached to never ending wires.  I held on to the door frame.  I guess I wasn’t ready.  Now, everyone tells you – so it really shouldn’t be a surprise but it was most definitely a shock.  That was not my Lyla.  My Lyla would be sitting up, pulling out every last wire, tube and IV!!!  But she wasn’t, she just lay there – lifeless.  To top it off – it was completely obvious that a machine was breathing for her.  I knew all of this – but it didn’t make it any easier at all.  Lyla was not out of the woods yet.  The relief and excitement I thought I would feel when I would see her did not exist.  It was just more fear!!! 

Would that beautiful girl ever wake up?  
Was Lyla in that little body????


  1. :( Get Well Soon Little Angel

  2. Summer, is beautiful Lyla ok?

  3. We need part two!! I hope she is doing wonderfully :)

  4. Hey Summer. Wondering how your son in law is doing? We have been praying for his safe travels to his wife and daughter. How hard it must be for all of you. Wondering how the immigration process is going. Praying for you in Pennsylvania!

  5. Just wondering how everyone is doing! Hope all is well, I check in from to time, its been quite a while!!

    Also, any update on if Taylor's family has been reunited in the midst of all the trouble?
    God bless!!

  6. Dear Summer & family,
    WE MISS YOU! I have been reading your blog since your first attempt to adopt Lyla, but haven't been commenting until now. I'm a fellow DS mom, and hoping to adopt some day (if finances ever allow). I'm also especially fond of Taylor's little family since I also married and moved abroad when I was very young (17!!). Can't imagine how hard it has been for them though, since we really had it pretty easy in comparison (obviously having an unexpected "special" baby who needed open heart surgery, at 20 and with no family nearby did not feel so fortunate at the time either, but at least we were all together).
    Anyway, I hope all is well with you, and you'll get back to writing soon. Lots of love to the whole family from Italy,