She Shouldn't Be Here

This post is one that I have been both dreading and excited about writing.  There will be some truths in here that it took this mommy a while to come to grips with.  Along with that, though, it is so extraordinary to witness what God did with our little miracle....

Getting home from heart surgery was nothing short of heavenly.  I FINALLY had both of my precious babies under one roof for more than a day a time.  We still could not take her "out" as long as her scar was healing so as to prevent any infection.  We had to scoop her up instead of picking her up normally due to her bones healing (they had to break...yes, break...her chest bone to get to her heart properly).  All in all, being home was awesome.  I could actually breathe (somewhat) now that the worry of surgery (and all that it entailed) was behind us.

Two weeks after we were home, we had a routine checkup with her cardiologist to make sure things were progressing normally after surgery.  It was at this visit that we got the news that changed our thinking and our family forever.  They checked her out and gave her a thumbs up for her recovery process.  The doctor began talking about how big the hole in her heart ended up being.  He reiterated how that it is totally unheard of and how very lucky she was to have survived.  When he saw our startled and perplexed faces, he proceeded to tell us that there was no medical reason Lynley should have survived before her heart surgery.  He told us that, medically speaking, a person (especially a newborn) cannot survive with only two full chambers in his/her heart.  As scary as it is for me to say this, he told us right then and there that we should have woken up one morning to a dead baby.  If the doctors had known the extent of her heart defect, they would have done surgery shortly after she was born and the likelihood of her surviving would have been small.  Excuse me?  I knew I had been blessed with a very special little girl, but, at that moment, I realized I was holding a MIRACLE!  The thoughts of all that could have been came flooding for a few minutes, but then I looked into Lynley's eyes and knew that this was all part of the plan.  God was revealing little at a time how he wasn't finished with her yet and how He held every fiber of her being in His Almighty Hands!  I must say that one doesn't get this kind of news about your child and then go on with life as if nothing had happened.  I believe I held her a little tighter (not too tight, though, since she just had open heart surgery), told her how special she was more than I did before, and just basked in the fact that God had chosen ME to be a part of an earthly miracle. 

No, in the beginning, I didn't love the fact that my sweet daugther would have to endure much more in the first few months of her life than most people do in a lifetime, but I was realizing that everything was going to be just fine.  Was she cured from everything?  No!  Lynley will still have obstacles to face as time goes by, but, my friends, I know with absolute certainty who held (and still holds) my baby girl in His Hands!  That is true JOY!

Now, on to our "new normal"....

Not Exactly What I Was Hoping For!

Surgery was scheduled for the following Monday morning IF Lynley's heart remained in heart block.  I spent that week willing that precious heart to "click" on its own.  I watched the heart monitor almost constantly while I was with her.  They informed us that, with each passing day, the likelihood of the electrical part of her heart kicking in was lower.  I kept believing but preparing myself for another (much less serious) surgery.  If it is your child, though, any surgery feels big.

God was definitely in our week's wait.  He gave our precious Lynley awesome nurses to take care of her.  I was astounded at how much love and care each one gave.  None of them minded my middle-of-the-night phone calls to check on my angel.  Also, we could not have felt more loved and cared for while there.  There was never a long stretch of time that we were alone.  So many friends and family visited us during our (seems like forever) stay.  That meant more to us than we could ever truly express.  Times can get pretty lonely staring at the heart monitor of your little blessing and willing it to change.  So many people made that lonely time bearable (please note that I did not enjoyable).  We even had to spend Father's Day in the hospital.  I hated that for Jason, but our other little miracle, Harrison, spent the night and day with us!  Though it was not the most perfect of places to spend a holiday so special, it was complete with our whole family together under one roof (even if it had to be a hospital roof)!

Even though my wish would never have been facing another surgery with my daughter, that was the reality.  They came to get her about 9:30.  Of course I was a big ball of tears, but it was a little easier.  They rolled her bed down the hall to surgery and let me stroll most of the way with her.  I just couldn't believe we were here again.  I had to tell myself that, in order to go home, this had to happen and it was best for Lynley.  We were assured that a pacemaker would not alter her life one bit...unless she wanted to play football in the future!  I felt pretty confident that my little princess wouldn't be choosing the football route.

Surgery went great.  It was once again hard to see her after the surgery, but the recovery time was much less.  She did really well and the pacemaker was doing its job perfectly.  We stayed a few more days (LONG days), and were finally released on Thursday afternoon.

Now it was time to breathe and recover.....

My sweet brother visited me!

Mommy got to put on my own clothes!

The nurses had Phineas and Ferb on for me!

A sweet friend brought me a stuffed animal!

My AWESOME doctor and my battle scars!

Sharing a Father'sDay milk!

One HAPPY family headed HOME!!!!

The Good and the Bad!

We met with Lynley's heart surgeon (who was extraordinary, by the way) shortly after the long surgery.  He informed us that the surgery went very well.  He was able to repair the holes in her heart, and she did great.  I guess by now, with all we've gone through, that I never fully breathe until I find out if there is a "but" coming from an informed mouth.  There definitely was in this case.  After the the holes were repaired, Lynley experienced heart block.  In simple terms as I understand it, that means that the electrical part of the heart is not making the necessary connections.  Because of this, Lynley was put on a temporary pacemaker.  If Lynley's heart corrected this on its own, the pacemaker would be removed and all would be just fine.  However, if her heart continued in this way, a permanent pacemaker would be installed through yet another surgery.  She had about a 75% chance of it correcting itself on its own.  Time would tell...

The rest of the news forever changed our family.  We would find out more at a later date, but we were told that the two holes that the doctors thought that Lynley had turned out to be one extremely large hole.  The hole that was repaired ended up being the entire size of her heart.  Her surgeon told us that was unheard of.  He had done over 100,000 surgeries in his career and had never seen a hole that large.  Wow! That was a lot to swallow.  Bottom line....Lynley is lucky (or blessed by God as we view it) to be alive.  More on that later!

Under the circumstances, considering everything that could have gone wrong, this was a very minor setback.  Our daughter excelled during surgery, was recovering nicely, and the surgery was over.  I decided to concentrate on that.  We would spend the next week waiting and waiting and waiting for the heart block to correct itself.  In the words of that famous engine...I think I can, I think I can, I think I can.

About 30 minutes after speaking with the surgeon, we were able to see our sweet angel.  I must say that nothing in the world can prepare you for seeing your child on a ventilator.  It was so hard to see, but, on the other hand, the love you have in your heart for your little one is able look past all of that.  She wasn't conscious, but she was adorable.  I held her hand (I couldn't hold her because of the ventilator and all of the wires) and talked to her like only a mommy can.  I wasn't going to let one more second go by without my girl knowing that I was there.  Have I mentioned that she is absolutely adorable?  We couldn't stay long at that time, because they had medical things to do to get her totally situated and comfortable.  Jason had to pry me away!  I'd been away from her for over six hours and I didn't want any more time to pass.  We went to eat with the group that was there to support us and came back a short time later.

Now our job for the next few days was to love on her (no problem there), help her recover from this surgery, and wait for the electrical part of her heart to kick in as normal.  So the wait began.....

Surgery Day....Please Take Me Instead!

As I lay there in the dark silence the night before Lynley's surgery, I contemplated how hard I would have to beg the medical staff to take me to the operating room instead of her.  I wanted to take this from her so badly!  As a mom, I just could not bear the thought of handing my almost-five-month-old to a complete  stranger for them to cut her open, put her on bypass, and fix her heart.  It was a very helpless feeling to say the least.  I battled wanting all of this over with to figuring out if I could escape with my precious little girl where they could never find us.  Meanwhile, while all of these scary thoughts were drifting through my mind, I stood over the bed of my baby and watched her sleep so peacefully.  It was then that the tears began to fall.  Right there, in the hospital room.  I spent the next few moments praying God's protection over my little one.  I would love to say that, at that moment, I got perfect peace about the whole situation.  I didn't, but I knew, without a doubt, that God wasn't going to leave us and so many were praying for our little heart patient!

Just going through the motions entirely, I got up and took a shower so I would be "ready" when they came for her.  I'm not really sure it's possible to be ready for something like that, but at least I would start the day somewhat put together.  I even put on mascara...talk about brave!!!!

They came for her punctually at 5:30 just as they said.  Her scheduled surgery time was 7:30, but, with all the pre operation "stuff", they needed her about two hours before.  Let me just say, it was a long two hours.  Every time I looked into her little innocent face, I would break out in tears.  Thankfully, she fell back asleep through much of it. Looking at her, knowing that she had absolutely no idea what was about to happen, almost did me in.  They did all the pre-op paperwork while I hugged her with all I had and cried.  That pretty much sums up the two hour presurgery time!  I was a basketcase and Jason was stoic and very matter of fact.  Have you ever heard that opposites attract?

The moment the nurses came to get her for surgery is etched in my brain for all time.  I handed my baby over to a complete stranger (although she was extremely friendly) and they whisked her away for surgery.  She put my everything in her arms with her head on her shoulders.  That sounds endearing, but that left my sweet angel looking at me the whole time they walked away down the hall.  It was then that I fell against the wall and to the floor in total helplessness.  I know that sounds very dramatic, but it is pure honesty from a broken hearted mommy!

Somehow, I (with my husband's help) made it to the waiting room.  We had a complete section filled with family and friends.  I am thankful for each and every person that was there to support us that dreadful day.  I did my best to look at each minute that passed as another minute closer to seeing my baby. Sitting there, I knew the possibilities.  I had heard all the open heart surgery horror stories.  I knew just enough to be scared stiff, wanting and praying constantly that my daughter would make it through this.  There were no guarantees.  I knew that.  The horrible thought of never getting to raise her was suffocating.

Although it sounds as if I was a mess (and I was somewhat), I also had a peace that passed all understanding.  I handed her over to a physician that I trusted wholeheartedly, but I knew the Great Physician had her in His almighty hands.  There were no guarantees that my little would be just fine after all of this, but I knew the One that created her loves her even more than I do!  How can I top that?

They gave us updates as the surgery dragged on.  Each update was the same...everything is going smoothly.  While each update gave me temporary relief, I longed for this whole ordeal to be behind us.  After a very long fivei-and-a-half hour surgery, we got the call that it was over and the doctor would be meeting with us shortly. It was over and our little trooper had made it.  Praise the Lord!

It was both good and bad after meeting with the surgeon thirty minutes later....