Brecken’s Life At Home

I’ve  realized looking over my post’s

that I’ve failed to share the part of Brecken’s story from

when he came home from the children’s hospital.  I’ve gotten so carried

away with piecing my life back together as best as I can that I’ve lost track.

Brecken came home for the first time on

January 19th, 2013.  It was around 4:30pm-several hours later than

originally planned.  Of course, when does one ever get discharged from the hospital at the original time given?

We made it home in virtually record time.  Torry sped a little faster than what he normally does.

I never said anything after viewing the speedometer a few times because I knew why he was

going so fast: to get us home quicker to ensure there were less chances of something happening with

Brecken in the car.  Aside from that, I was a nervous wreck during our drive, not because of

Torry’s speeding, but because of the open possibilities as to what could potentially happen.  I

was scared to be alone, without any medical personal. I was scared that I wouldn’t do something right

and not be able to save my son should something go wrong or to stop any sort of suffering that may have possibly

occurred.  My mom was in her own car,

following behind, on the edge herself should we need to pull over for any reason.  It put a small

bit of comfort in me having that safety net.

To my surprise,

the ride home was uneventful.  Well, besides the bit of excitement I had

being in a different environment with my son other than a hospital.  I reveled in that entire ride.

I couldn’t help but smile seeing the sunlight touch his face while he sat there all content.  It

got too bright for most of the ride so I had to cover his car seat on the one side.

I cannot express enough

the relief I felt when we finally arrived in front of our home.

Bringing him home was what we were always supposed to do.  It just came 11 days late.

It was kind of chaotic at first.  Our house was a mess prior to giving birth to Brecken and we didn’t obviously

have anything set up downstairs for him to settle in to.  I was in a slight state of panic.  I was over

stimulated by the mass amounts of bags brought in from our cars.  I didn’t know what to do or where to start

to make Brecken’s life more comfortable.  One of the first things I requested was to have Torry

bring down the gliding rocker.  I knew we were going to spend our entire time with our son right in

our living room.   Brecken was never on a sleep pattern.  We never really knew if and when

he actually did sleep.  His eyes were not controlled well, so sometimes they’d be half-closed, one closed one open,

or both open.  So it wasn’t ever really a routine we needed to form with him to sleep in his own bed.

Once Torry brought the rocker down,

I was instructed to unbuckle Brecken and sit down with him

while everything else got taken care of.  My mom went on auto-piolet mode to start making sense

of the clutter we were surrounded by.  I couldn’t be more grateful for all the help she provided during

her stay with us.  We laid down some of his blankets on the one end of the couch and had

whatever small things we needed for him close at hand on the edge of the couch, the floor, or the

coffee table.  I also had Torry bring down Brecken’s lamp from his room so that

the lighting in the living room was softer then the lamp we already had down here.

Shortly after getting settled in,

a gentleman from Hospice came by to drop off the permanent oxygen

machine that Brecken would be on.  He taught us how to use it and what to do

should something go wrong.  It was an annoying piece of equipment as it wasn’t very

discreet in it’s sounds it produced.  All day everyday there was this constant motor sound going.

But, after time, we became used to it.

Since Brecken needed 24/7 care and watching over, Torry and I

had to do it in shifts.  This was extremely hard to do.  I wouldn’t sleep because I feared

Brecken would pass away without me with him.  My main requirement having him die at home

was to make sure, with all my might, that he did so in my arms.  We didn’t know when it would happen.

The palliative Care Team from the children’s hospital told us it could be days or a few weeks, but probably no

longer than a month.  I didn’t want a single minute with him to go to waste.

In the first day or so,

instead of going upstairs into our room to sleep, I’d make do on the floor in

the living room so I was close to my baby should anything happen.  I will admit,

part of my fear was not knowing how well Torry would handle suctioning Brecken. Eventually, my trust in him grew

and sleeping eventually became a little bit of an easier task. The floor

proved to be a very uncomfortable place to sleep, so I finally started going upstairs.  I’d

only sleep for an hour to maybe 3 hours max and run my days just on that.  I still have no idea how I was able to go 9.5

days with only 1-3 hours on average of sleep.

I just cannot explain the fear I had of not knowing

when ‘it’ would happen, so forcing myself to sleep was hard to do.  I felt somewhat guilty as well.

I felt that all of my seconds, minutes and hours should be holding Brecken and telling him

how much I loved him and how happy he’s made me-not on my sleeping.

Everyday, once I made my way downstairs to take over for Torry, he’d

make a cup of coffee for me so I’d have the energy to get myself through the day before he made his way upstairs for his

turn to sleep. Occasionally

I’d cat nap with Brecken on the couch.  I trusted myself to sleep with him.

Every morning the hospice nurse, Stacey, came by.  Amy,

the social worker, would come occasionally as well.  Two days after we brought Brecken home,

we had our amazing photographer, Danielle, from Polka Dot Umbrella Photography, take our family

photos, and Brecken’s newborn photos.  I felt my picture taking wouldn’t do justice considering

the circumstance we were in.  I cannot get over enough, how appreciative I was for her.  She did

our session at last minutes notice.  The photos turned out so beautifully and I literally look through them

all every single day.

Our 9.5 days home with Brecken were littered with

various visitors of friends and family members.  This was so hard to handle

because I wanted everyone to meet him, but at the same time, it was just

too overwhelming.  I couldn’t handle more than a few short hours with people

without my mind going crazy.  Most of me just wanted to be alone with my baby,

snuggling in peace and quiet.  My midwives came by for a few visits and post-partum care.  They

also put word out in their community of mamma’s about our situation so they were arriving with

food and gift cards to grocery stores etc.

After Brecken was born,

I stopped eating for the most part.  It was rare for something to pass

through my mouth of solidity.  My mom had to constantly ask me if I had eaten anything

yet in my days and my answer was always “No”.  She pretty much forced fed me as best as she could.

I just didn’t want to eat.  I had no appetite.  I was stressed and scared and also didn’t want to waste time

putting Brecken down to satisfy my own belly when he wasn’t eating at all.   The only thing I wanted

and craved was Coke & or Cherry Coke.  Because of my lack of eating, I had dropped all of my baby weight

and then some.  About 30 pounds total. (This has now been partially regained with slowly developing an appetite

back)

One of my other battles at home was weaning myself

from pumping.  I started pumping the day after Brecken was born and continued at the children’s hospital.

But, once Torry and I knew what our decision was, I found it to be very frustrating to leave Brecken

every 2 hours to pump for no reason at all.  I, stupidly and not knowing any better, stopped cold turkey

one day at the children’s hospital.  I paid for it later in the day with engorged, hard breasts and had

a clogged milk duct that was pretty painful.  My mom informed me that it’s something that I had to wean

myself from otherwise I’ll be in huge amounts of pain and could develop infections.

I was angry about that.  I was angry that I still had to waste time doing something that took my time

away from my son.  I also was producing so much, that I could have fed that whole NICU.  I felt

that it would take forever before I saw a decrease in the need for pumping.  It was definitely something I didn’t want to

be doing post-Brecken’s death.  I didn’t want to keep pumping for no reason after he was gone.  I felt that would have

been too painful of a task to continue doing. But, to my surprise,

the day right before Brecken died, I went without pumping at all for the first time.  And since then I haven’t pumped.

I successfully weaned myself in about a weeks time.  Granted, I still leak to this very day, as

I was warned by the lactation consultant, but overall, no need for pumping.  Thank goodness.

We had Brecken baptized on

Monday, 1-21-13.  I’m not going into major detail about that, as it

is a very sour subject for me.  It was something I didn’t want done with my son

and felt the pressure from other family members were to blame.  It angered me that it was done

because it was what THEY wanted instead of what we, as his parents, wanted.  It was a very short

ceremony performed in our home.  It probably only took about 15 minutes or so.  I took no part in it other

than holding him the entire time.  I said no prayers and didn’t do the sign of the cross on his forehead.  I was

too angry.  The priest left behind a candle with a glass holder and a baptismal gown Brecken never wore.

Everyday I watched my son slowly slip away.  There was

already a difference in him just after one day being home with him off fluids.  He began

to lose weight.  As if he wasn’t already tiny enough, he was even more so by time he died.  It

got to a point where I almost didn’t want to change his diaper because I didn’t want to see his poor

body withering away. But it had to be done and half of the time it was done with tears to

accompany it.  He was doing everything opposite a newborn baby should have been.  He wasn’t eating,

he wasn’t cooing, he wasn’t crying, and he barely moved.  As he began to lose weight he also began to

be a lot cooler so he wore his outfit, thick socks and he was wrapped up in a thin blanket to swaddle him and

then his thicker elephant blanket on top of that.  His head was especially getting colder a few days before he

died so I kept a knitted hat on him 24/7.  Because he was so wrapped up, I nick-named him my “Baby Burrito” (I rolled

my R’s and used a little accent every time I called him that) Ask me to do it for ya one day.  I love to say it =)

He often stared out.  It was as if there was no life in his eyes.

I always wondered if he really ‘saw’ me. Could he comprehend seeing another human being?  I had

no idea.  It still kills me to this day not knowing if he knew who I was or if he recognized my voice as I told him I loved

him or if he could hear the beat of my heart as he lay on my chest.  Sometimes, when it was my turn to watch him and

Torry made his way upstairs to sleep, I would sit with Brecken in my arms and just cry.  Half of the time I cried

so much it made Torry come downstairs.  He always feared that I was crying because Brecken had died.

Despite Brecken not being able to do a whole lot,

he still had a personality that we got to know.  For instance, when he needed to be suctioned,

he HATED it.  It made me feel so terribly bad, but at the same time it made me giggle.  I loved to see

some sort of reaction to something.  His mouth is what got suctioned the most, and that he didn’t

mind so much, but it was when we had to suction his nose that he reacted to the most.

That kid, the moment you put the suction close to his nostril, would start to move his head away

 and get this “No way!” look on his face -lol.  Once we were done suctioning, Brecken would always

do a really BIG yawn that included having his tongue stick out a little bit.  Brecken also hated

to have his diaper changed.  I think most of it had to do with him being cold and being exposed

to the air since he was always so bundled up.  He would start to shake a lot.  He was also the same

way the one time I gave him a bath.  I knew, because of how much he hated to have his diaper changed,

that he wasn’t going to like the bath either.  But I wanted to give him one since A.) he never had one since

he was born & B.) because I wanted to create that memory and do another mommy thing with him.  If

I picked him up and was moving him around to get him in a comfortable position to hold, he would,

as I describe, roll his eyes at me like “Oh my gosh mom, just get comfortable would ya?” -lol

Brecken’s life at home was filled

with so much love.  I don’t think a baby could have gotten so many

kisses and snuggles than what he did.  I feel like I didn’t kiss him enough even though

my lips were always attached to him.  For the most part, he spent his time in mine or Torry’s

arms.  Sometimes we’d let him lay down on his own because sometimes it wasn’t

always comfortable for him to be held due to his secretions.

There’s only one thing I regret not doing while he was home, and that was not reading him

any books.  Especially the very first book I got him before he was born.  It was a book I had

gotten when I was in first grade and had always loved it.  I’m sure most of you know it.

It’s called “Love you forever” by Robert Munsch.  Ironically this book was published the year I was born: 1986.

Even though I never read him the book, I repeatedly told him at the children’s hospital and at home:

“I’ll love you forever, 

I’ll like you for always,

As long as I’m living,

My Brecken you’ll be”

Love you forever

Enjoy some photos of Brecken while he was home ❤

IMG_0145 IMG_0147 IMG_0148 IMG_0149

IMG_0156 IMG_0153 IMG_0150

snug as a bug Snuggles1 Silly BreckenLooks like he's smiling

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IMG_0165 IMG_0166

Brecken and daddy

P1080034 P1080028

P1080031 P1080021

IMG_0186 IMG_0184P1080019 P1080018

P1080014 P1080013

P1080022 Laying on couch

IMG_0178 IMG_0174 IMG_0176 IMG_0177P1070984 P1070985P1070988

IMG_0200 IMG_0199 IMG_0198

IMG_0197 IMG_0189

IMG_0193 IMG_0192 IMG_0188

P1070991 P1070992

P1070994 P1070997

Nurse Stacey helping giving him is first bath.

P1080002

P1080005 P1080004

We had to finish is bath with him dressed because that’s how much he hated it.

P1080009 P1080010

P1080011 P1080012

A few days before he died.

There aren’t too many pictures because I don’t want to remember him looking this way.

Brecken in hate up close Nickis picture

3 thoughts on “Brecken’s Life At Home

  1. Oh Sarah,
    What a beautiful story of the love you gave to and have for Brecken.
    I just wanted to say I firmly believe that babies know who their mamas are, regardless. I think he knew your smell, your voice, your heartbeat. Those are all unique to you and having been surrounded by that for the 9 months you carried him, he knew you. He knew it was you who was holding him, kissing him, comforting him. That’s all he knew, and what more did he need to know? His mama was there.
    Just sayin’ 🙂

  2. Sarah, I am a palliative medicine and hospice physician who was also a family medicine doctor in my early career. I have had the privilege to help care for babies and their families in the last weeks, days , hours of life. I am also a mother,who can only partially understand / image your grief. But I can say confidently that Brecken knew you were his loving mommy. He probably did not visually see you well, as most newborns do not have focused vision. But you already said he felt touch as he did liked being suctioned and was clearly aware of changes in temperature. That means his light touch receptors and nerves and his temperature sense nerves were intact and appropriately sending him information. So he felt warm soft touch kisses it sounds liike every few minutes. Warm soft touch is a naural human expression of love , so while you were holding and kissing him he was receiving the message of your love. Fetuses hear their mothers heart in utero as you said. Part of that”hearing” is actually feeling the hearts contractions so again, Brecken, would recognize you by you physical heartbeat when he lay on your chest thru his touch senses. Your cardiac rhythm was his soundtrack for 9 months. Even if he didn’t lay on you chest while in the NICU, he would know your heart rhythm immediately when back in your arms. It’s the same as not hearing a favorite song in years , you immediately get taken back to that time. looking at the pictures of your beautiful son show evidence of his love for you. look at his coloring when you are holding him compared to someone else touching him that same day. He always is pinker when you are touching him compared to when other people are holding or touching him (using the outfit he was wearing as indicator of it being the same day) . I can give you more evidence of his love and feeling loved by you and Torry esp but I think you get my point. You are a wonderful loving mother, and Brecken received your love and knew your love and loves you too.

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