A week or two ago a Medi-Vac Helicopter landed behind Sean's school.  (No emergencies... just for the students to see/experience or whatever).  Liam and I went down to check it out.  Liam Loved sitting in the pilot seat and "pushing" all the buttons.  We had to keep a close eye on him =)

Sweet Baby Neil,

Your brother Liam has been in bed for hours but I check on him once more before your dad and I go to bed.  I quietly go into his room and cover him back up with blankets as he never fails to have wiggled out of them.  I give him a kiss and take just a few seconds to admire him.  So sweet and peaceful and innocent.  I wish him a good night one more time and leave his room. 

After the nightly routine of getting myself ready for bed I say my prayers.  I always pray for you Neil.  I never know quite what to say, quite what to pray for exactly.  So I just pray for you. That you know I love you.  Then your dad and I say our prayers together.  Again we thank Heavenly Father you and pray for you.  We are always thinking of you spoken or not.

Your dad and I then lie down, I pile the blankets high, your dad sleeps with only the sheet.  Sometimes we talk, sometimes your dad is so exhausted he is asleep literally when his head hits the pillow.  I hear his rhythmic breathing and feel happy he is finally getting to sleep after one more long stressful day.

And then, then it is our time.  Just you and me.

In the stillness of the night my thoughts turn completely to you.  Every aspect of you.  Most often I replay every detail imaginable of our last day together.  I always think of what it felt like to hold you in my arms.  Of your defined eyebrows, your knowing eyes.  I think about all of the people who took care of you.  I think about our time in the hospital together.  I think about you.

In the stillness of the night when seemingly the rest of the world (at least my world) is asleep you have my full attention and love.  As the minutes and hours pass by on the clock I hold on to every bit of you I can.  I hope you are happy.  I know you are happy.  I hope you don't miss me, but I hope you know me.  I hope you love me.  I hope you know how much I miss you and how much I love you.

Sometimes I am so tired and "our time" continues on into the early morning hours and I know I need to get to sleep or I'll be miserable the next day.  But it's not as easy as that.  Sometimes my mind wanders to other things going on in my life.... but one way or another my thoughts always wind back on you.  My baby. 

I like our time together.  It is always filled with so many emotions.  But most importantly it is filled with you.

I miss you Neil.

I love you Neil.

The other day your big brother was asking for you out of the blue.  I thought maybe he was asking for "noodles"... but I repeatedly asked him if he wanted "noodles" or "Neil".  He wanted you.  He misses you to.  I hope you two play together in your dreams.

I'm going to go lay down and try to go to sleep again.  I'm sure I won't drift off very quickly so we still have plenty of "our time" together.

I love you,
mom

Want to know one of the hardest questions to answer?

How many kids do you have? 

yep, I can say "one" (they can clearly see I have one b/c Liam right there). But that's not true, and I don't like to say "one" because Neil is a real person, he is my kid, and I almost feel like I am disowning or disrespecting him if I say "one".  Like I have forgotten him or something.

But... If I say "two" then inevitably they say something like where is the other, or how old is he, or something like that.  Then I have to explain that he died two months ago.  Then there is that very awkward pause and ohh, im so sorry.  Some people go on and on about a friends twice removed cousins sister in laws brother in law who lost a baby.  Or something to that affect. And of course the looks of pity. 

There is no good way to answer that question.

Aside from the "grieving process" which I'm not really sure I know what that is anyway... there are quite a few other things that come along when a person dies.  

I got my first taste of this in August of 2011 when I stayed up in Port Angeles with my Grandpa as my Grandma was dyeing.. and died.  I got a huge drop kick into the world of dealing with arranging funerals, cremations, calling endless insurance companies, life insurance, utilities etc to let them know my grandma had died and to "take care of"  all sorts of affairs.  It was emotional, stressful, and hard but I did it.  I was happy to do it.  I was happy to be there for my Grandpa doing all the "hard" clerical thing that needed done so he didn't have to deal with them.

But this experience DID NOT prepare me in the least for dealing with all the clerical things that need taken care of when your own child dies.

Tomorrow it will be two months.  Two months since I held my baby in my arms and kissed his sweet cheeks.  The ache hasn't lessened. 

The clerical parts of dealing with death haven't seemed to lessen yet either. 

The week following Neil's passing we had to deal with answering a lot of questions we had never considered.  Where do we bury our baby? How, when, program, what funeral home, how do we transport him to Vale?  What it will cost aprox. $2000 to transport him.... ok we will do it ourselves... can we legally do it ourselves?  Need special permits.. ok well..  who will speak at the funeral, logistics, programs, food... etc... endless it seemed.

There is always  a call or letter from some place it seems with something regarding Neil passing. 

Most recently I called his insurance company b/c I couldn't' remember if I had ever called them to let them know he had died or not.  I figured better safe than sorry.

After waiting on hold (of course)  I bravely uttered the words, "my little baby, Neil Owen Penberthy died".  The very kind lady couldn't immediately find record of his death in the state database and told me that I needed to mail them verification that he had ACTUALLY DIED. 

oh, man it was all I could do to hold in the sobs.  Seriously!!  They needed proof!  They didn't believe me?!?  I promised the lady that he was not here anymore.  She again kindly told me she understood but needed proof. 

Really!? 

Dealing with these "clerical" things just seem to make hard things harder.

While I was in Seattle with Neil I met a girl.  Her name is Nicole.  We met one night when I had the courage to ask if I could sit with her and her 18month old daughter at a dinner table (at the Ronald McDonald House).  There were plenty of open tables, but I was just lonely.  From that night on I often found myself sitting with her.  She became a friend, a familiar face, someone who "understood". 

I read her blog post this morning and what she expressed tugged at what few remaining heart strings I have that are intact.  She so well put into words my feelings and emotions.  Most everything she says I too feel.



http://neongreylife.wordpress.com/feed/

Pray for her. Pray for her little Jade.  Cancer is a horrible, horrible beast.  Nicole and little spunky Jade are still in Seattle battling, never knowing what the next day, let alone hours will bring. 


Much love,
Anna

Easter is fast approaching.  Amidst all the Easter eggs, bunny rabbits, cute decorations I found this video extremely uplifting.  How important it is to remember why we celebrate Easter. 

When Liam Naps, or when I'm alone in the evenings, or when I'm lying in bed trying to go to sleep is when I think.  I'm sure this is typical of most people, but to me thinking has been hard.

As I think tears typical start rolling down my cheeks.  Sometimes sad tears, hurting tears, grateful tears, aching tears, frustrated tears, hating tears, laughing tears, anxious tears, regretting tears, tired tears, and some times just tears.  Tears that are full of some emotion that I can't even begin to put my finger on.

And then Liam wakes up, or I wake up, or the phone rings, or I pick myself up off the couch b/c something needs to get done.  And the tears have to stop.  And life goes on.  Whether I like it or not it does... for better or worse. 

Sometimes I let the sun soak into my face, or make Liam laugh, or talk with a friend, or give Sean a hug, or look at pictures of Neil and feel hope and happiness.  I try not to feel quilt for feeling happiness, but sometimes do.

I will see my baby again.  Not soon enough, but I will.  For this knowledge I am so eternally grateful.  How could I go on without knowing that someday I will be reunited with him?!  I am grateful for Jesus Christ, for his atoning sacrifice so that we can be together again.  The Lords plan is real, it is true.  We Lived with God before we came to earth.  We came here and received a body of flesh and bones.  Once we die our spirit returns to our Heavenly Father and our body stays here. One day our bodies will be resurrected and reunited with our spirit.  One day, if we live righteously, WE CAN be with our families together forever.  Of this I know.  I feel it so strongly. 

And of course a picture of our baby Neil, and our big boy Liam. The ever more urgent and pressing reason I need and want to be better and do better.

That's right.  Darn Wednesdays!!!

Last night as we were going to bed I commented to Sean, "today is Tuesday, and tomorrow is Wednesday".  Sean was like yep, it is... so?  So, today being Wednesday marks three weeks since we held our baby for the last time.  Three weeks ago today Neil died.  Wednesdays are hard. 

Sean lovingly told me that I shouldn't count days or weeks or think of things like that.  I know what he meant, but as I told him I can't help but to.  I HATE that time is passing.  I HATE that today is three weeks since my baby was alive.  The more time that passes only seems to put more distance between us.  Distance that I wish wasn't there.  As the days and hours go on it just means it has been that much longer since I held and kissed and smelled and felt my baby boy.  And that hurts.

So to feel closer to my baby here is one more picture of him.  He is so sweet.

Questions and Answers


1) Q. Did we know before Neil was born that he would be born with "problems"?

A.  Yes.  But we did not know what problems, or the extent of the problems.  At our 20 week ultrasound we found that his bladder was enlarged.  2 weeks later after much discussion with a specialist in Seattle we were told that our baby would not and could not survive.  We were given two choices; the first to terminate the pregnancy, second to wait for spontaneous abortion.  We chose to wait for our baby to die by himself.  We were told the chances of him surviving past the next two weeks were astronomical (a nice way of saying there is no chance).  He confounded the doctors and survived.  He kept growing and living. 


2) Q.  So what DID you know before he was born?

A.  We knew that his bladder wasn't draining properly and that his kidneys were dilated.  What this meant for his future.... that was a big question mark.  We knew that it was possible he wouldn't survive minutes after birth.  It was also a possibility that he would be in the hospital for a few days and be home with us shortly there after.


3) Q. Was Neil premature?

A.  Well, yes.  But that is not why he was in the NICU at Seattle Children's Hospital.  At 35 weeks we had a regular check up with Dr. Cheng in Seattle.  At this appointment we were told his amniotic fluid was dangerously low and that he hadn't grown in the last four weeks.  Dr. Cheng said we needed to deliver him tomorrow.  Sean and I said all right.. and thus he was born via C-Section.


4) Q.  What did he have?  (What were his medical conditions)

A.  This is a hard one, it cannot be answered fully here. So very basically he had Prune Belly Syndrome.  He also had a PDA that did require ligation, and bad lungs. Unrelated he had Mal Rotation of his gut requiring surgery. During his short life he also had a serious infection called NEC and Pneumonia.  Keep in mind that like with most any disease or syndrome there are varying degrees of severity.  Unfortunately Neils severity was well, severe.  Prune Belly itself encompasses several organs please look up more info on this syndrome on your own if you desire.  It is too hard to explain it all here.  Unfortunately there are some, but not a lot of resources about it online.


5) Q. Why did he die?

A.  His lungs failed him. 


6) Q.  Is Prune Belly Syndrome genetic?

A. No. 


7) Q. Did you know he was going to die?

A.  First of all what kind of question is that!   (It has been asked to me)  The short of it is NO, and YES.  All along did we know?  No, of course not.  February 13th.  The day he passed away, YES.  Early that morning we knew.  That story will be saved for another day.  Maybe.  But at the same time that might just be too sacred for me to share.

These past few week have seemed to pass in a sort of a haze or fog. A fog I want to get out of, but at the same time don't.

One of the few conversations I remember having at Neil's Funeral (sorry everyone else I talked to) was with 2 of my cousins, Cassi and Kayla. As we stood in the foyer of the church I remember saying, "if only we could be kids again playing on Grandpa's farm building forts and running wild and free through the fields. No worries or cares in the world". To this Cassi wisely responded, "oh Anna I know exactly what you mean, but at the same time you wouldn't take any of this back would you"? (she said something to this effect). After honestly reflecting on her comment I said, "no, no I sure wouldn't".

Even though all of this is the hardest, hardest thing I/we have ever been through I have often times thought back on the conversation with Cassi and Kayla. I would never take back the time I had with Neil. Does that make sense? No matter how hard it is now, how hard it was, and will continue to be, I am so eternally grateful for him. For our baby boy. For the time I had with him in the womb.  For the time I had to hold him and love him in my arms, and for the time I will have with him in the eternities.

So I'll say it one more time. No, no I sure wouldn't take any of it back.

Yesterday was 2 weeks.

Uncharacteristically Liam woke up abt. 12am last night. Also uncharacteristically when Sean went to comfort him he ended up bringing Liam into our bed. Liam talked a little and quickly fell asleep, as did Sean. Me on the other hand... well lets just say I didn't.

As I laid there staring at and admiring both Sean and Liam I had overwhelming feeling of happiness and gratefulness. Liam is so perfect. His eyes, eyelashes, ears, nose, mouth, kissable cheeks, healthy body etc. Then of course came the overwhelming feelings of sorrow and aching from missing my baby Neil.

I am amazed at how practically in the same "sentence" I can have such deep contrasting emotions.

ohhhhhh.

I sure do have sweet boys =)

Our sweet baby boy passed away on February 13th 2013 in the evening.  My heart aches so deeply even writing that.  I miss him so terribly.

  He passed away in our arms with us telling him over and over again how much we loved him. 

As Sean and I walked out of the hospital that night, empty handed, without our baby, leaving our baby boy there in that horrible place my soul was so heavy.  It took every ounce of will power I had to will my ten ton legs to take one step after another... down those long hallways and out into the crisp night air... the fresh air..... the air Neil never had the chance to breath.  The grief and sorrow I felt tore a hole in my heart and soul.  I left my baby boy there... never to see him or hold him again.   I just left him.

 My desire to turn back around and run through the hallways, scoop him back up into my arms was overpowering.  The only thing that kept me moving forward was Sean's strong grasp of my hand ..... and reality.

Today is one week

What I wouldn't give to kiss that forehead once more.  To smell him, to hold him.  To gaze into his eyes.  I miss him so much.  When I close my eyes I can feel him and smell him.  I never want to forget this smell, this warm forehead under my lips. 

oh man.... this is too hard.  I can't write more.

This afternoon I drove down to Olympia for my uncle Jim's Funeral.  As far as drives go it wasn't bad, although it was I-5 there was good traffic and no rain.  It did feel good to just be driving.  I think I could of kept driving for hours, maybe even days. 

The Funeral was beautiful, aunt Mick sang Ave Maria.  I am amazed by her strength. 

It was nice to see a bunch of family, if only briefly, but still nice.

Today is Liams 2nd Birthday... wahoooo!  Hard to believe he is two.  Growing up so fast.

Neil continues to be cute and fight for his life. 

Sean has a test Monday so didn't get to come up this weekend, but we will get to see him next weekend. 

I'm going to attempt to feel the sunshine on my face today.

Today is Sunday.

Eating is a bother.  I wish I didn't get hungry, then I wouldn't have to worry about eating.

I miss the simple days.

And that is all I have to say.

Today was a good day.  Neil required less sedation and no Vec (paralytic).  Counting my blessings.

http://www.mormonchannel.org/video/mormon-messages?v=910937379001#.URCIKiLlWd4.facebook

A friend posted a link to this video on Facebook.  Please watch it.  You will probably see why I needed it tonight =)

Wow, there are a lot of things weighing on my mind and heart.  I'm not sure why over and over again I'm surprised at how one person (in this case me) and feel every emotion described in a thesaurus all together at the same time.

A few of the things/emotions on my mind.

~One of the nurses today called Neil a "Man Child".  I thought it was pretty funny and true. He is so dang cute.  He is growing up before my eyes.  He has such defined thick eye brows and a defined hair line it makes him look so "manish". 

~Neil and I got to "communicate" for a few minutes today.  As I've explained before (not that I would expect anyone to remember)  what I mean by that is we got to look into each others eyes.  Oh how beautiful and trusting they are.  It was a bit of a rough day and I didn't get to hold him, but at least we got to communicate for five minutes.  In his rare awake/not sedated times I always try to talk to him.  I talk about whatever random thing comes to mind. Tonight I told him the story about how Sean proposed to me.  It must of bored him a great deal because by the end of the story he was fast asleep.

~Sadly we haven't seen improvement in Neils respiratory status.  The good thing is it hasn't gotten worse... but honestly that isn't a very big consolation.

~I get to be reunited with Liam soon.

~In my two months here I have made a very dear friend.  Literally a "God Send".  It was random how we met, but meant to be.  She also had a baby in the NICU.  I say had because her precious little girl passed away today.  I don't know why even writing that last sentence was so hard and heart breaking for me.  Man things are hard sometimes. 

My friend has been exactly who and what I have needed since we have been here.  We have a "weird" amazing bond.  There are all the regular reasons you become friends with a person, similar interests, you click, you enjoy each others company.  Well with this friend it is all that and more.  Aside from all the "regular" things she gets me right now more than anyone else could because she has been going through the same things.  I can freely share ALL of my feelings and emotions and thoughts with her without the thought of being judged.  I need her and she has needed me.  It is good to feel needed.

I am sad I won't see her smiling face around the hospital any more.  I am sad her arms will feel so empty.  I am devastated that the hole in heart got even bigger today.. and maybe even caved in.  I don't know how to heal a heart like that.  I don't know how to help a heart like that.  I love her and wish somehow I could help take some of the pain away, but know I can't. 

She is so strong.  I have been continually amazed at how in times where others should be lifting her up and comforting her she is the one doing the lifting up and comforting.  EVEN today.  She even texted me this evening telling me thank you for helping her carry some of her burden.  She said she would come to the hospital any time I needed her.  I don't think most people understand how hard that would be.  To come back to this hospital, to this NICU, the one that her and her daughter spent 5 months in. The one that her daughter passed away in.  What a sacrifice that would be. 

~My Aunt (really Sean's Aunt) 's husband passed away yesterday.  He had a valiant battle with cancer.  Sean and I talked to her last night.  How hard, how sad.  Again, she is another strong woman, one who so naturally and easily puts others before herself. 

~ Having my Friends baby, and Sean's uncle pass away, kinda makes everything more real.  Really brings it home.

~And so here I sit.  In my room, in front of the computer sad, hurting, grateful, tired, hopeful, relived, anxious, helpless, excited, frustrated, aching, feeling loved.

~Tomorrow is another day.  I will be grateful for that.  Grateful for my family.  Grateful for the tender mercies of the Lord.

Neil had his PDA Ligation surgery yesterday.  The surgery technically went well.  Now his body is working on it's "new" "normal".   Significant Hemo dynamic changes took place the instant they closed his PDA.  He is needing to be kept heavily sedated for the time being. 

One more step forward we hope!!!!!

Well, it's Sunday night at 9:15pm.  Sean is on his way back to Yakima.  Yesterday and especially today have been pretty rough.  After hours of watching Neil struggle to breath, having his room full of RT's Nurses, and Doctors trying to help him we finally gave him medication to paralyse him.  SO sad, so hard to see, so horrible.  Necessary, yes.  Horrible, yes.

Talk about heart wrenching to see him laying there totally limp, yet his brain still working.  While he was paralyzed they tried putting a art line in.  They were unsuccessful at the attempts because his arteries kept spasming they decided to take a break and try again in the morning b/c he had tears streaming down his face. 

Break my heart.

Laying there paralyzed unable to cry or move, not understand what is going on, only knowing you are in great pain.

Again, necessary.... yes.  Awful... yes.

He is getting worse not better.  We HAVE to start moving in an upward fashion here soon =)


His heart (PDA) surgery is on for tomorrow morning.  We have had a lot of discussion of timing for the surgery.  Do it now when he is so sick and risk putting him through a surgery when he is not 100% and the ramifications of that.  Or wait to do the surgery until he gets "better" but then running the risk of him not getting better and only continuing to decompesate, and decompensating to a degree the the surgery is no longer and option.  And there not being any more options.  Caught between a rock and a hard place.  The surgery needs to be done, his PDA needs to be ligated and we just don't think he has a chance of improving until we ligate.

So tomorrow, and these next few days at the least are going to be very hard for Neil.  He is going to be very sick.  They will be hard for me to.

Is feeling this pain, anguish, and deep sorrow I feel in watching Neil suffer so, and allowing him to suffer so even a glimpse of what our Heavenly Father felt watching his son Jesus Christ suffer in Gethsemane and hang on the cross???  I can't imagine how that must of been, know how I feel watching and allowing my son to suffer and knowing Christs suffering was so much greater.

I know the atonement is real. When I allow myself I find comfort in knowing I'm not alone.  Knowing He knows exactly how I'm feeling, how Neil is feeling. 

My sister-in-law Penelope got me a calender for Christmas.  It is art work by Greg Olsen.  The January picture is of Christ with his arm around a child.  Oh how I pray daily that Heavenly Father has his warm loving arms around Neil. 

Today as I was sitting in Neils hospital room and Dr. (lets call him Dr. R) came in.  He is Neils main Pulmanologist.  I  began updating him on Neil's respiratory function etc and Dr. R interrupted me and said, "no I am here to see how YOU are doing".  Taken back and surprised I had to double check that I had understood him correctly, but sure enough he was there for me not Neil.

It probably needs to be understood that of all Neils many doctors Dr. R is the most blunt, mater of fact, straight to the point doctor I've met.  I appreciate this about him, he doesn't beat around the bush, although often times it's hard to hear things he says. So when he pulled up a chair and wanted to SIT and talk about ME I was very surprised and touched.

In general I never know how to answer the question "how are you doing?"  I mean really what am I supposed to say???  But Dr. R and I had a nice conversation, a really nice conversation.  He wanted me to know he was thinking about ME and worrying about ME.  How this is probably the hardest thing I will ever have to go through.  He reassured me of a lot of the things I'd been thinking and feeling.  He reassured me it was OK to feel and act like a momma bear.  He encouraged me in many ways to "take care of myself".  I'm still trying to figure that one out =)

There was no epiphanies or anything of that nature, none the less it made all the difference to me today that Dr. R took time out of his busy day to talk to ME.  I am understood. 

Tender mercies

Like I said HE was the LAST person I would have ever expected to come in and care about me and have an emotional conversation like we did.

Life with a baby in the NICU is a roller coaster.  Today was a down day.  Postpartum hormones mixed with a suffering baby mixed with a bunch of little things all kind of accumulated today and the tears flowed.  I was reminded how much it sucks to be here. I was reminded how much I just want to be home with my husband, my (almost) two year old, and my little baby.  I was reminded how much I yearn to take away all the pain and suffering Neil is going through.  I was reminded of how much his little body is really going through.  Most of all I was reminded how I would do or give almost anything to be able to pick him up, take all his tubes/IVs etc off/out of him, cuddle him and take him far far away from here. 

Man!  What a downer way to start a post!  Right!  Sorry.  I really could go on even more, and explain in greater detail, but I wont.

Neil has taken a bit of another nose dive.  He has Pneumonia.  To a healthy person this can be dangerous.  But to a baby who already has chronic lung disease and is on a ventilator it can be deadly.  Yesterday and today he has just been so sick, having such a hard time breathing.  His body has been struggling to recover his breathing when he cries. 

I don't know why I continue to be surprised at how quickly things can go from being "ok" (realizing ok for Neil is a very relative term) to bad.  His body is tiny and sick so it doesn't take much to affect him. 

I know things will get better.  But that doesn't make me feel any better right now =)  Life is hard sometimes. 

Today my mom encouraged me to blog b/c there are always people asking how Neil is doing, so for better or worse here it is.  I could only post happy and cheerful things, I really could but then I would be distorting the truth. 

Is there a sliver lining in the clouds?  Sure of course there is, there has to be.

But, none the less Neil continues to be the cutest little baby boy.  I love him.  He is a fighter for sure. 

I hope tomorrow I get the chance to hold him =)