April 15, 2014. The longest day.

The day started like the few before it.  I was up by 5:00, I showered and dressed, and then got Dan up to do the same.

The hospital was gracious enough to allow us to stay in a tiny room right outside the doors to the NICU.  There was a small couch that converted to a small bed, just big enough for two people if they held each other tight.  There was a shower in the bathroom with a curtain that didn't quite reach the floor, so after each use, the floor was soaked.  There was a phone that luckily, once again, had not rung the previous night.

I shook Dan awake and told him to get ready and a said another silent prayer thanking God that she had made it one more night.

Just like the other days since her birth,we got ready, and took the few steps from our room to her bedside.

We always tried to get there before 7:00, usually it was around 6:45.  7:00 was when the nurses changed shifts so we liked to be there to get an update from the night nurse on our little Rebecca.

We would spend the morning sitting by her bedside rubbing her head, changing her diaper, kissing her, taking her temperature, and praying.  These were the only things we could really do for our little one.  The machines were breathing for her and were feeding her as well so rubbing her tiny little head and praying big prayers for her was how I spent most of my time in the NICU.

Around 9:00 the doctors and all their students, made their rounds and we would wait anxiously for their updates, hoping and praying for any bit of good news.

The morning of April 15th was different though.  Instead of the cadre of nurses, doctors, and med students that normally made the rounds in the NICU each morning, only Dr. Bishop and one other doctor came to Rebecca's bedside.  I can't even remember exactly what they said but it was nothing we hadn't already heard before - she was dying and there was nothing they could do.

When she left, Dan wondered why it had been just the two of them.  I told him those were "compassionate rounds".  No need to drag the whole team along to watch her tell us our baby was dying and there was nothing they could do about it. I'm sure she did it to be kind, but it just felt to me like they had given up on Rebecca and were just waiting patiently for her to die.

Several times in our stay at the NICU that week, they had asked us if we wanted to move Rebecca's crib to a different spot, perhaps over in that corner so we would have more privacy.  And each time, we adamantly said no.  I liked the spot she was in.  It was in the very center of the entire NICU.  When anyone entered or left, we could see it.  Everyone had to walk past us.  I didn't want to be moved into a corner, out of the way.  I wanted everyone to know that we were there and we were fighting for our baby.  Even if no one else was.

Rebecca's lungs would fill up with fluids because her esophagus led to a small pouch instead of to her stomach.   So periodically the nurse would use some suctioning tubes to drain the fluid that was building up and overflowing into her tubes.  We had a new nurse that day and after we got back from a quick lunch in the cafeteria, there appeared to be reddish fluid in one of her tubes.  We called the nurse over and she said it was a little blood.  She drained the tube and everything seemed to be fine.

I was pissed though. I blamed the blood on the nurse and felt that if she had been a better nurse, there wouldn't have been any blood in Rebecca's tube.  This was totally irrational as there was nothing this nurse did to cause this blood.  Rebecca was dying but it wasn't the nurse's fault. 

Someone from another department came around to help us get footprints of Rebecca's hands and feet so that we could have them as a reminder, I guess.  A keepsake, if you will, since we wouldn't be able to take our baby home.  It was a nice gesture but it annoyed me.  Plus the woman taking the footprints was horrible at it.  She couldn't get a good print no matter what she tried and that was making me mad too.  She was going to come back later in the afternoon when Peter and Sarah got there so she could get all three of the kids hand prints together. I was glad when she left.

Peter and Sarah had to stay late at school that afternoon because they were making up work they had missed while at the hospital waiting for Rebecca to be born.  My parents were bringing them straight to the hospital from school.  But before they could get them there, things started to take a turn for the worse.

Rebecca's numbers kept dropping, her lines kept filling up with fluid.  Her machines were beeping and the nurses came rushing over trying to get her stabilized. Dr.Bishop was called and many people where huddled around her crib.

Dr. Bishop looked at me kindly and said simply, "We're losing her.  I think this is it."

My heart sank.  She asked me if I wanted to hold her and of course I said yes.

Because of all the machines she was hooked to, holding her was a complicated process that required the help of two nurses, pillows propped just so, and a lot of maneuvering so that her breathing tube did not come out.  Previously we left holding Rebecca until the kids were with us in the afternoons so that we didn't risk her tube coming out.  But now, it didn't matter.

I sat down and they arranged pillows on my lap and they brought Rebecca to me.  I had just gotten her in my arms when I looked up and saw Peter and Sarah coming through the doors of the NICU.  My heart dropped.  They can't be here for this, I thought.  They can not watch their sister die.

They ran over with big smiles on their faces, excited to see Rebecca and get to hold her again.  But we told them what was going on and we all began to cry. They gathered chairs around me and we all rubbed her head and kissed her head and prayed and cried.  My parents came in and we gathered more chairs around.  The nurses brought portable room dividers over and made walls around all of our chairs so that we could have some privacy.

After a bit, Dr. Bishop asked if we wanted to go ahead and remove her breathing tube.  She told me that this was in fact the end and that if we removed the tubes we could eat least see her face while we were holding her.  She also let us know that the whole process of dying wasn't necessarily quick and that it could take a while.

So they took out her breathing tube and I felt defeated.  Without the tube, she would surely die.  But oh how nice it was to see her little face without a tube coming out of her mouth.  I had only briefly seen her in the operating room after I had her and by the time I was out of recovery and she was on her way to Brenner, she was already hooked up to other machines with tubes that covered her beautiful face.

The only time I  got to see her face unobstructed was when I first said hello and as I was saying goodbye.

I held her on my lap all afternoon and into the evening.  My brother came after he got off work and the whole family was still gathered around her.  Sweet Rebecca got so many hugs and kisses in her final hours. 

Dr. Bishop was correct when she said the process could take a while.  Rebecca's numbers would drop and then they raise back up and remain steady for a while.  And then they would drop and then they would slowly raise back up.

There was talk of dinner.  Mom and Dad took Peter and Sarah to the cafeteria.  Dan and I stayed with Rebecca.  It was evening now and all the lights in the NICU were dimmed.  There were more tears, more hugs, more kisses, more head rubs.

There was talk of whether or not they should all go home and if they went home whether or not the kids should go to school the next morning.  It was decided that they would all wait.  We would all be there when she died.

And a little before 9:00, we watched the numbers on the machine fall and stay down.  We watched them eventually drop to zero.  I heard my Dad say, "That's it."

I held her in my arms and I watched my baby take her last breath. And she was gone.

________

Prior to her birth, the counselors and doctors kept asking what we wanted, how we wanted it to go with Rebecca.  I thought that if one more person asked me what I wanted for Rebecca, I was going to hurt them.

What did I want for Rebecca? I wanted her to be born healthy.  I wanted her to grow up. I wanted her to live a beautiful life.   I wanted her to bury me, not the other way around.

Since that wasn't an option, and since they kept asking us, we had to consider what we wanted her life to look like.

Did we want to take her home to die immediately after she was born?  No.  We wanted her to at least have a chance so we chose surgery.

When she struggled as soon as they got her to the NICU and they almost lost her and then refused to do surgery on her, did we want to put in a breathing tube?  Yes.  Put in a breathing tube.  We want to give the Lord a chance to work a great miracle.  If she's breathing, there's still a chance for a miracle.

We were with her every minute of her life  except for a few hours to sleep each night and a few minutes to eat at mealtimes.

And that's what I wanted.  If you can't save my baby, then I just want to have some time with her. And I didn't want her to die alone.   That became my prayer to God.  Please let us have some time with her and please don't let her die in the middle of the night while we are sleeping.

And God, in His goodness, answered my prayers.  My baby died in my arms, surrounded by her family, covered in kisses and tears.  She was loved and I have no doubt that she could feel it as we loved her Home.

And the words Dan wrote in her obituary ring true, Rebecca's time on this earth was short, but no child was ever loved more.