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
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”
Enjoy some photos of Brecken while he was home ❤
Nurse Stacey helping giving him is first bath.
We had to finish is bath with him dressed because that’s how much he hated it.
A few days before he died.
There aren’t too many pictures because I don’t want to remember him looking this way.