While at the
Ronald McDonald house after receiving the most devastating news about Brecken,
Torry and I laid in bed holding, crying, talking, sniffling. We kept saying over and over that we couldn’t believe
the prognosis we were delivered. How could this have happened to our baby boy? Is this really true?
Is this really happening? We tried to wrap our mind around it; tried to comprehend it.
The following day we sat and talked to the Palliative Care Team. They are a type
of support in the hospital for parents going through what Torry and I were. They explained things more clearly,
spoke in more laymen’s terms for us to understand. We were also explained about our choices, about the goals
we wanted to obtain with Brecken. What is it we were wanting for him.
There were two choices, but Torry and I already mutually agreed through burning tears what was
best for Brecken. We just hadn’t said it out loud to anyone else. Saying it out loud would make it sound final. We were
afraid of hearing ourselves speak of what we agreed upon. No parent wants these kinds of words to come
out of their mouths regarding the well-being of their child. No one.
We had just entered into the next phase of hell we were already in.
With either decision, Torry and I felt we were being selfish. If we kept him alive and went on with
life with him on all kinds of support, his 24/7 care, his surgeries, his illnesses we felt selfish
for wanting to keep him alive like that for own comfort and ease of mind. He’d be alive.
But then we felt selfish if we decided to let him go. We feared being looked at
as heartless because we wouldn’t have the burden of taking care of a child in his condition. We
felt selfish because it seemed almost like an easy way out.
But in the end, we knew, overall, what was best for Brecken. What was best for Brecken
was comfort, love, and no suffering. No pain.
What was best for Brecken…. was to let him go.
Oh god, do those words hurt so much to even type. We had decided to let our firstborn, our little legend,
our little boy, leave this life.
We said it out loud. We said that this is what we wanted. But in regards to actually
taking action, we didn’t specify when we wanted it to happen. After another meeting with the panel of Dr’s
and more meetings with the Palliative Care team, we finally started to take small steps to make it happen.
I was so afraid to take these steps. I felt I wasn’t ready. It was incredibly scary to actually proceed with making it
We started with signing a Do Not Resuscitate.
Then his oxygen was changed to 100% at a pressure of one liter/minute.
Now all that was waiting to be decided on was whether or not Torry and I wanted to let it happen
at the hospital, up in our own private room, or to take him home. At first, we had decided to do it at the hospital.
We were afraid to create the memories at home and had originally thought doing it at the hospital would make
it a little easier. But after being given a tour of the room we would occupy I had decided I wanted to bring
my baby boy home. I did want to create those memories, as painful it may end up being, I wanted him
to see his home. To use his things. To take his first car ride. To take his first bath. I wanted him to have a life
as close to as it would have been originally at home. I felt I would regret it if I didn’t.
We told the Palliative Care team that this is what we wanted. It was friday January 18th.
They busted their butts to make it work out that we could leave by the next day. Normally these kinds of arrangements
would have had to wait until Monday. (It was already evening on Friday when we decided)
Alayna, the main NICU
nurse who took care of Brecken during his stay, was not on duty this night. She wouldn’t be back on duty until
Sunday. We would already be gone. I had this sinking feeling in my stomach because I really wanted to see her
again. I wanted pictures of her with Brecken. I wanted to say goodbye and wanted her to be able to say goodbye to
Brecken. I asked the nurse on duty if it was possible by any means to get ahold of her while she was off duty to ask if
she’d be willing to come by the hospital on her day off. I wasn’t sure how professional this was or how often this
request is made of nurses. I had grown very fond of Alayna during our stay. No other nurse took care of him the way
she did. She treated him as if he was her own child. She was so gentle and kind and loving with him. It would have
pained me to leave the hospital without seeing her or saying goodbye.
So the nurse on duty messaged Alayna on Facebook while she was on her lunch break. When she came back,
she told us Alayna had responded and said she’d be there before we left. I was so relieved. It brought tears to my eyes
that she cared that much.
My mom was with us at this time for her first of two visits. We all went back to the Ronald McDonald house
to clean and pack everything in preparation to leave. Brecken was due to be discharged by 1pm on Saturday, January
The next morning we packed up our cars and headed to the hospital. I entered the NICU alone with Brecken’s car seat
while Torry and my mom went to go park their cars. As I went to go wash my hands, per the usual routine before
entering the NICU, one of the front desk ladies, Karla, approached me. She told me that what I was doing was very
and that she totally agreed 100% with our decision and said how she knows exactly how we feel because she had to go
through nearly the same thing a few years back. Her baby girl, they found out while still pregnant, had something
wrong genetically and were told she wouldn’t live long if she made it to term. Karla and her husband decided to take
their baby girl home. She wanted her daughter to feel the sun’s rays on her face, and wanted her to pass in her arms at
home, not in the hospital. I asked her if she still felt OK with that decision today. She strongly said “100%!” Karla’s
words made me feel so much better and at ease with the decision Torry and I had made. Karla gave me a big hug and
wished us luck on our journey home.
Back in Brecken’s room, we finished up with some paperwork.
We were shown how to use the portable suctioning machine and we were shown how to work the oxygen tank he’d
be going home on. Then Alayna arrived. She was a site for such sad eyes. I was completely overwhelmed at her
kindess to take her personal time to see us off. She got to hold Brecken. Really hold him. Not for a fleeting moment
while handing him off to either Torry or I, but to enjoy him for herself. She was so grateful for us thinking of her when
we already had so much to do and on our minds. She was so happy to be able to see him one last time and to say
goodbye. I took some pictures of her with him, and my mom took some of Torry and I with her and Brecken. Then it
came time to finish up last minute details at the hospital. Brecken’s PICC line still needed to come out. This was his
line to the fluids and vitamins he was being given. I wanted this to wait until the last moment possible, as this was
his main life support.
Before that was done, I had blood work drawn on myself because I decided to donate all the milk I had pumped
during our stay. I had filled my 2 designated containers and had the nurses start another set because I was producing
so much. When that was finished, we fitted Brecken in his car seat to adjust the straps. Alayna helped with this as
well. She also ran all over the NICU to grab all sorts of supplies for us to go home with. She even, while off duty,
wanted to help take his PICC line out and give him one last diaper change. That was a hard moment for me, because
we were taking out his main lifeline. This was making it real. The process of him passing away eventually, started
moment the PICC line was taken out.
Brecken was placed in his car seat and Torry ran down to pull the car around.
Alayna helped with carrying things down as well as push his oxygen tank. Once everything was packed in the car
Alayna and I said our goodbyes. We hugged three different times and then off we went.
I, of course, sat in the back with Brecken. I was really excited but nervous. We had about 2 hrs ahead of us and
Brecken wasn’t in the best position for dealing with his secretions. I was afraid I’d need to suction him a ton and
afraid that he was going to be upset in the position he was in. He wasn’t a fan of his back and head forward. He
preferred his side or his belly. But, to my surprise, he handled it very well. I only needed to suction him twice the
whole ride home and he never showed signs of discomfort.
We arrived home in about 1.5 hrs. Torry, to my surprise, sped home instead of taking it easy.
He wanted to get home as soon as possible so that there was less time in the car for potential problems.
And home we finally were.
It was official.
Our baby boy was home and we could finally live as close to a normal life with him
for however long it took for him to leave this world.
It was a bittersweet moment.
Alayna with Brecken
Brecken getting fitted for his car seat
Brecken’s first & only car ride
Brecken’s first night home