Layne’s Story – Part Ten

Shortly after the C-section I remember being wheeled out of the OR, down the hallway, and into room number one.  This is where I was going to spend the next two full days recovering from major surgery.   As I was being wheeled into the room I was greeted by Jeff, my mom, and my dad.  Jeff had returned to the room before me and had given them an update on how the C-section went and how Layne was doing.  In that moment we were all so happy.  Layne had already beaten so many odds, and we were so happy that she was alive and stable.  Since finding out about her CCAM and hydrops she spent every single day fighting for her life.  There were times during my pregnancy where her heart was so compressed, because of the cysts, that we were not sure if she was going to make it. Her and I had fought long and hard to make it to 28 weeks, and looking back, it truly was a miracle in itself that we made it that far.  

As soon as Layne was born, she was whisked away and we actually did not even get to see her.  At this point, all we knew was that Layne was born alive, intubated shortly after, and stable; but we knew nothing more.  The plan all along was to deliver Layne and more than likely she would need surgery right away, spend time in the NICU at CHOP, recover fully, and come home.  Well these plans came to a screeching halt when I went into labor at 26 weeks.  A 26 weeker is far too fragile to go through the type of surgery Layne needed to survive.  It was next to impossible.  Thankfully I was able to stay pregnant for another two weeks and delivered at 28 weeks.  Two extra weeks in the womb is amazing, but a 28-week baby is still so delicate.  An extremely sick 28-week baby on top of that.  Our circumstances were discouraging, but we were going to do absolutely everything possible to save our girl.  She deserved to be fought for, and thats exactly what Jeff and I did, for 9 long weeks.  

No sooner after getting settled into our new room, a fetal surgeon walks in.  He introduces himself and dives right into Layne’s condition and her prognosis.  We were already aware with how serious things were, but they hit a little harder now that she was actually here.  This was our reality.  My goal quickly went from staying pregnant for as long as possible to doing whatever needs to be done to keep my baby alive.  The surgeon made it very clear that if we were to leave Layne intubated and do nothing, she would die.  The cysts were far too large and her lungs were far too underdeveloped for her to live. He then goes on to tell us that he is willing to perform surgery on her, and yet again we were given hope.  Hope that this surgery was going to save her life.  He went over all the details of how he was going to proceed with removing the lower left lobe of the lung and how this would give her the best chance of surviving.  Along with the hope that comes with her being given the opportunity to have surgery comes great fear.  I still had not laid eyes on her or knew any information about her birth stats, but I could only imagine how small a 28-week baby was.  I was terrified for her little body to go under and endure extensive surgery.  She was already so fragile, and it broke my heart knowing she needed this to have a chance at surviving.  Life sure isn’t fair, and in that moment I felt that more than ever.  After hearing the doctor explain everything in detail and give his professional opinion on removing a portion of her lung, Jeff and I without a doubt wanted to move forward with the surgery.  I signed on the dotted line, still shaking like crazy from all the medicine I was on.  We had fought way too hard to give up in this moment.  She was fighting hard to stay alive and deep down I knew she was in the best hands. 

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For the next three hours we all sat in my room chatting about everything that had just happened.  The fact that she was sick, how I went into labor at 26 weeks, and how she was finally here and in surgery.  We laughed and we cried, but we mostly laughed.  It is hard to describe, but I was happy.  Of course, I wished Layne was healthy and she was not born at 28 weeks and in surgery, but that was the cards we had been dealt.  It was our story and I was proud of it.  No matter the outcome, I wouldn’t have changed a single thing Jeff and I had done since finding out about her CCAM.  

As time went on and the hours passed, we assumed things were going okay.  After all, no news is good news.  As soon as we knew Layne was coming, Jeff’s parents headed to CHOP with my sister and Jeff was keeping his parents in the loop on everything as it was happening. They were only about an hour away from us now.  As the night progressed, we all became more and more anxious.  We desperately wanted an update on how the surgery was going, and no sooner did the nurse come in and told us that Layne made it out of surgery and she was alive and stable.  I was so thrilled.  We were all smiling from ear to ear.  She had done it again.  As soon as she told us my first thought was how soon can I get down to the NICU to see her.  I wanted so bad to meet my little girl.  The nurse said that as soon as she makes it to the NICU and they get her stable then Jeff and I could go and meet her. 

Midnight was approaching, and it had been about an hour since the nurse had told us Layne was out of surgery.  We were expecting her to come in my room at any moment to give us the okay to go down to the NICU.  Right before midnight our nurse comes in, Cecilia was her name, and said things with Layne were not looking good…. She said she is extremely unstable and it was time for us to go down to the NICU.  I knew this was not good.  You could tell in her voice.  She immediately started prepping me to get out of bed when did another nurse came rushing into our room calling for Jeff to follow her now.  Then I knew things were really not good.  Not good at all.  Jeff jumps up and runs out of the room with the nurse while Cecilia continues to get me out of the bed and into a wheelchair.  Mind you it has only been a little over four hours since my C-section surgery and this was my first time getting out of the bed.  Just minutes after Jeff left I was situated and she was rolling me out of the room and towards the elevators.  We enter the elevator and Cecilia comforts me, but I remember feeling so numb.  I had not officially been told she was gone, but I knew in my heart.  As the elevator reached the floor we exited and began heading towards the NICU.  As we approach the NICU I see 40 to 50 people gathered around what looked to be like some type of triage room.  Cecilia wheeled me right up to the entrance and I see Jeff.  He is in tears.  We lock eyes and that is when I knew she was no longer with us.  

As I entered this triage space everyone started to back away.  They all looked at me with the saddest faces. They shook their heads and told me they had done everything they could and how sorry they were.  As I am wheeled further into the room I see Jeff holding her hand and doctors surrounding her incubator.  They were wrapping up CPR and starting to remove all the tubes and wires.  I am in tears as I know she is gone and this is the end.  Within a few minutes one of the nurse practitioners, I wish I could remember her name, came up to me and gets down on her knees and offers the sincerest apology.  She said they did absolutely everything, but Layne’s little heart could not take anymore.  She then told me that she personally, with Jeff’s permission, baptized Layne as she was taking her final breaths.  Just after being baptized our sweet Layne passed away holding the hand of her dad at 12:01 AM on January 18, 2020.  I wish more than anything I could remember this NP’s name so I could handwrite her a thank you note.  She has no idea how much this met, and still means, to Jeff and I.

As the nurses and doctors started to clear the room, I sat there in tears.  I could not believe it was happening.  I was so upset and felt so defeated.  Jeff comes right over and sits in the chair next to me and we cry together as we watch them continue to unhook her from all the wires and cords.  As soon as she was cord free the nurse asks if I would like to hold her.  I situated myself in my wheelchair and as soon as they placed her into my arms all I feel is milk running down my belly.  It is like my body knew I was holding her, but had no idea she was no longer alive.  It felt so unnatural.  A mother should never have to hold their deceased baby.  I hate that stories like mine are a reality to a lot of mothers in this world, and I would not wish something like this on my worst enemy.  Life is so unfair.  

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And if you are still reading this I encourage you to hug your littles a little extra today, have a little more patience when they are driving you crazy during these crazy unforeseen times, and enjoy this Mother’s Day weekend.  I know quite a few people, I hate to say it, that would kill to be able to do the same.