Miracle Myles

As I drove to work on April 6th I had no idea how my life was about to change. I took the same route, looked at the same houses, passed the same restaurants, listened to the same radio stations, had the same horrible feeling about leaving my family to go to work, returned some phone calls and texts and reflected on my day and the things coming up as I always do on my drive to work. I parked on the usual 4th floor and swiped in at the usual 653pm. I checked the assignment and was happy to see I wasn't in charge for the first time in a while and could enjoy just being a nurse, not everyone's boss slash problem solver slash damage control person. Good ol' patient care. It's what I enjoy and what Iam good at. I walked to what we call the back and saw I was assigned 3 patients. Sweet no admission. Everything was falling into place, just as it was planned to be.  I was here in this exact moment for a reason. But tonight was going to be anything but usual. One of my rooms was 3120. Not important but the people in the room was what was going to be important. I received report from the day RN. C-section with twins, one baby with us one baby in NICU. I was told baby in NICU was pretty sick. Not an uncommon situation.  I have had many patients with twins in the NICU.  One was here and mother-baby in fact.  Not so bad. Could be worse.  Both babies could be in the NICU. But again this night was anything but usual.  I made my patient rounds leaving 3120 for last.  I walked in and quickly tried to read the mood of the room. Sara had her mom and sister visiting  and although the mood of the room seemed ok, the bittersweet emotions showed all over her face.  Baby Girl A lay in her bassinet, who I would come to know as Ruby. Baby Boy B upstairs fighting for his life. Within the early part of the night a NICU doctor came down to talk to Alex and Sara.  This rarely happens.  Therefore not good news.  Myles wasn't doing well.  The doctor left, giving them time to discuss a few things.  Keyword time.  Within two hours the doctor was back.  Again not good.  He explained Myles was getting worse.  Again he left and again he was back.   But this time I received a call and was told the doctor was at the nursing station for me.  This can't be good I thought.  It wasn't. Myles wasn't doing well and the doctor wanted to get Sara and Alex upstairs.  He said not to rush but I felt an urgency.  That was at 3:30am.  I had Sara  and Alex upstairs just before 4:00am.  We were racing against time and vomiting, pain, and passing out was not going to stop us.  On the way upstairs, Sara asked me if she was going there to say goodbye?  I told her I didn't know but I would find out. They deserved the truth.  The doctor wasn't being clear.  We entered the NICU and as Alex and Sara scrubbed in, it bought me some time to get a look at Myles and get an answer from the doctor.  Myles was quickly taking a turn for the worse and the doctor now confirmed it was going to be goodbye.  I got Sara and Alex into a room.  As we waited I prepared them the best I could for what they would see. There was no preparing them for the moments that lay ahead.  They had 45 minutes with Myles.  The emotions in that room were unbearable.  As I would begin to tear up I would turn away and tell myself that this was not my moment but theirs. I learned that night that you can't close your heart to the things you don't want to feel. I was put there that night for a reason.   Sara and Alex there are no words to express what you two mean to me.  I will forever carry the four of you in my heart.  

Every year  Cedars participates in the March for Babies walk. This walk is now personal to me and his name is Myles. Today Alex, Sara, Ruby and I walked to remember and honor Myles.

Sara and I walking

Just after crossing the finish line

Sara and Alex

  

Scream a not so little scream

ARGGGGGGGGGGGG!!!!!   I've had it and can't take it anymore.  For those of you who don't know it already Jaimin is a screamer.  Not any kind of scream but a high pitch ear piercing scream.  The kind that literally hurts your ears.  Oh c'mon you say, it can't be that bad! Its bad.  He screams for no reason at all, when he wants down, up, more food, when he see's someone, when he is in the carseat, at the soccer field, in a store and the list goes on and on. We went to a Samohi baseball game the other day and had to leave because his screaming was so loud that it was distracting the players. It's constant from the time that he wakes up, to the moment he falls asleep at night.  We are constantly trying to entertain him to distract him from screaming.  We went from blaming the parrots at Adam's moms house to a possible hearing problem to maybe he is autistic.  The parrots maybe a small factor.  He definitely doesn't have a hearing problem.  And from the research I have done on autism, he is way to social and doesn't have any of the other signs.
We were in Target the other day and I heard a child screaming. I got such joy to know there was another screamer.  When I looked up to see how old the child was I saw a boy to was mentally disabled.  He had a reason to be screaming.  Something was wrong with him.  Jaimin doesn't have anything physical going on with him.  Not that I would ever wish for that, but a least if you could see that something was wrong we wouldn't get the reaction we get.  People look at us like we are horrible parents.  Like we don't know how to control our child.  Like we have a child that has behavior issues or a problem child. I have tried. We are great parents.  Talking to him about it doesn't work, ignoring him doesn't work, turning our backs to him doesn't work, screaming back at him doesn't work, blowing on his face doesn't work, covering his mouth doesn't work.  Sometimes I can't take it anymore and just want to pick him up, shake him and yell "stop it , just stop it".  But I am sure that won't work either, nor is it right.
A good friend of mine asked if we sign with him? Oh my gosh, why didn't I think of this?  We signed with Jordan when she was a baby and it was great.  So off to the computer I went to learn again the most common words in our day that we use.  He picked it up so fast!  It was great!  This is going to work!  He is now signing and still screaming.
I don't know what I would do without Adam.  He is a great dad.  I wish I could be half the mom he is dad.  He handles Jaimin and his screaming so well.  We are challenged everyday with this issue and I am at my breaking point.  I hate to be wishing away the days but I can't wait until he stops screaming or at least we find out why he is screaming.