Trisomy 13- The Story of Addison Faith

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It was May 31st, 2015, when I first took
a pregnancy test after weeks of nausea. At this time I was a single mom to two kids
and working long hours as a registered nurse. The pregnancy test came back
positive and I immediately broke down to tears. I struggled with the fact of
having three kids and was pressured by the father to not carry this pregnancy
to term. I decided to contact a local Pregnancy Resource to verify my results
and obtain an ultrasound.

I went in and took another pregnancy test and I knew
the result would once again say I was pregnant. I set up an ultrasound for the
next week, all the while I couldn’t tell anyone I was pregnant. I don’t think I
could ever prepare myself for that ultrasound. I couldn’t see the screen to
start the ultrasound, but did remember the lady performing the ultrasound
staring hard at the screen. She asked me if I was ready for it and of course I
said I was. “It’s twins!” she said.

 

The look on my face was one of complete
shock as I never imagined I would be pregnant with twins and that there were
three different sacks. Three sacks meaning there at one point could have been a
third baby! Then came the news that Baby A was 8 weeks with a heartbeat in the
140’s while Baby B was only measuring 5 weeks and heartbeat was only in the
90s. They gave me paperwork on preparing me for the miscarriage of Baby B as
they didn’t believe it would survive long.

In my small hometown, our hospital
does not have the NICU and qualifications to handle risky pregnancies so I was
referred to a larger hospital to have further ultrasounds done. It was at the
14 week mark that I learned Baby B had passed, but Baby A was looking great.
They just wanted to follow-up in 8 weeks to do an anatomy scan and then I would
be okay to only see my regular OB doctor. In the meantime I did the Quad
Marker blood test that I had always done to help screen for certain disorders.
My best friend and I made the hour and a half trip down to the specialist and
little did I know my life would forever change.

During the ultrasound I noticed, while I was 22 weeks along, my little baby was only measuring 18 weeks. This
was completely different as my previous two always measured two weeks ahead of
time. The nurse finished up and gave me my pictures and told me to wait for the
doctor to come and speak to me. It was then that the doctor began to tell me
that there was some abnormalities seen on the ultrasound.

He stated it appeared
that the spine was not forming correctly at the base, the brain structures
weren’t the ‘Butterfly’ shape they should be,
the right ventricle was thick, and that there wasn’t as much amniotic
fluid as there should be. He stated with the very general findings that he
couldn’t exactly tell me what the cause was but that likely it was a
chromosomal abnormality. I felt my whole world crumble right them.

Everyone was
so excited to find out the sex and I had multiple messages asking how it went.
But, how was I going to explain that something was wrong with my baby and they
couldn’t tell me what? I would have to come back in a few weeks for more
ultrasounds and would also have to see a pediatric cardiologist to take a
closer look at my baby’s heart.

Immediately when I got home I called my OB
doctor and told them what was going on and asked for the results of the Quad
Marker as I never heard back and was hoping that was going to shed light on
what was going on. But, the nurse stated it was a negative result and that it
showed no increased risk for any disorders tested for.

So every 2-3 weeks my
best friend and I made the trip to the larger hospital to see how my baby was
growing. While there was a thick right ventricle, there was no other heart
defect and the function appeared to be good. Though every time I went for the
anatomy ultrasounds, there was always another problem seen. At 30 weeks I was
instructed to begin twice weekly nonstress tests. While they were only supposed
to last 30 minutes or so, I was always there for 2.5 hours as they always were shown to be nonreactive.

On December 15th
I got off a twelve hour shift and went in for my nonstress test. Once again it
was nonreactive and my OB wanted to do further testing, called a Biophysical
Profile, the next day to further evaluate how my little girl was doing. It was
with the failing of that test that the specialist from the larger hospital
wanted me flown down immediately. I arrived after the 45 minute flight
expecting to be there for another month as I was exactly 35 weeks, but my
little girl had other plans.

After being there for 30 minutes I went into labor, and instead of stopping it they wanted to deliver her. So, just after 8 pm on
December 16th, 2015, I gave birth to a 3lb 15 oz and 17 inches baby
girl. Little did I know the difficult road I had ahead. At midnight I finally
got out of recovery and was pushed to the NICU to meet my baby girl who I named
Addison Faith.

She wasn’t on any oxygen and they said she was doing great. They
showed me a small area on the top of her head where her scalp hadn’t fully
closed and her extra digit on each hand. The following day when I was pushed
back to the NICU I finally got to meet her neonatologist who became my most
supportive person. She stated blood had been sent off to do genetic testing and
I would likely hear the results in a few days. During the night she also required
oxygen to be placed and her blood sugars began to drop.

By the next day I had
noticed that I had never seen her open her eyes and asked the nurse who had
been taking care of her if she had. She said no and that she would consult the
doctor. We soon found out that the structures of the eyes were too small and
would not function as working eyes and that she couldn’t even open her eyes.

When she was 3 days old I was in my room eating dinner when the neonatologist
came from the NICU to my room to tell me that the results were back. Addison
had full Trisomy 13. I sat there in shock and asked what this meant for her.
She stated that babies rarely make it longer than a few days to weeks and I
lost it.

For the next several hours I sat there crying and trying to ask God
why this had to happen to my baby. What did I do to deserve this? What could my
baby have done to deserve a death sentence? I was discharged from the hospital
and moved my belongings down to the NICU with my daughter. There was no way I was
going to leave the hospital for one second while Addison was there.

Around the
21st of December Addison began retaining fluid and stopped peeing. I
sat there for an hour watching them trying to put a catheter in my daughter
while she lay there not making a single movement. A plastic surgeon came just
before Christmas to look at her scalp. He stated it will heal over on in its
own, but when she gets older she likely won’t have hair growth there. Those
words hit me hard. Did he not see her diagnosis? There was no when she is older.
I couldn’t even believe that he would say that to me.

She came out of the fluid
retention just fine and her heart looked amazing on the ECHO’s. Her kidney
ultrasound was perfect and didn’t have a problem with them. The day after
Christmas, my family came down and we baptized her as we didn’t know if she
would make it out of the hospital. Every day we struggled with Addison’s blood
sugar and feeds. We would stop the feeds for a day then slowly try to increase
them. I performed her feeds and placing her feeding tube because I wanted to
take her home until it was her time to be called home to Heaven.

At her hearing
screen we also learned that she was also likely deaf. My baby was blind, deaf,
and with how her brain had formed she would have mental disabilities. It was a
few days after I learned her diagnosis that every doctor on her team and the
genetic doctor sat and we talked about options. They were fully supportive to
whatever I wanted to do. But I knew I wanted my baby to be as comfortable as
possible. I didn’t see the point in putting this little baby through procedure
after procedure to endure the pain from the procedures for the ultimate outcome
of death. They supported my decision to keep her comfortable and work toward
the goal of going home.

On New Years Eve, hospice came in to talk to me. Being
a nurse I was fully aware of hospice and what it offers to people. But, this
was my baby daughter. I could not give up on her. I needed her in my life and
would not accept that fact that she wouldn’t be around. So after letting her
make her talk I thanked her and told her I wasn’t interested. So there my
daughter and I sat next to her crib. I looked at her and realized how selfish I
was being. I couldn’t imagine a life without her. How was I supposed to live
knowing I couldn’t hold her, kiss her, or watch her grow up? I wanted what was
best for me which was saying no to hospice because I thought that meant I was
giving up. But I realized me choosing hospice would give her the best quality
of life that she could have and that God had a plan. When it was time for her
to go I would tell her to go, and one day I will be there with her.

I walked out
of the room and told the nurse that I wanted hospice and remembered walking
down the hallway and sat and cried. I didn’t want people to feel like I was
giving up. I didn’t want to be judged. But as her mom I knew this was best. So,
the next day we decided we would aim at getting her home on January 4th
or 5th. Her blood sugars were improving, but they would send me home
with glucose in case they dropped so she wouldn’t seize. She was still on
oxygen but was simply room air as a reminder to just breathe.

On the night of
January 2nd I decided to stay in the parent suite so I could get a
couple hours of rest so I would be ready to take her home knowing she didn’t
sleep much. At 3 am on January 3rd, my alarm went off to wake me up
to pump. I decided to ignore it and sleep for another 2 hours before I pumped
because I was so tired. I fell back asleep to then be woken up to a knock on
the door. I sat up and my heart dropped as I couldn’t see why someone was knocking
on the door at 3:20am. I opened the door to find the resident doctor standing
on the other side. She said Addison had taken a turn for the worse and she was
requiring full oxygen at 6L to maintain her oxygen saturation at a good level.
She said at this point we could turn her oxygen back to room air and let her go
peacefully if that was my wish.

I asked her if this was her showing us that it
was time. She shook her head yes and asked me to come be with her. I saw her lying
in her crib with a few nurses around her bed. I asked for them to turn the
oxygen back down and let me hold her. She was quiet and wasn’t making a fuss. I
cried and talked to her hoping that she could hear me. Around 4am she went off
the monitors.

The doctor came in saying she was no longer breathing and would
give me a couple minutes. A few minutes later she took a breath. Then there was
another breath and I saw her vitals come back on the screen. The doctor told me
it sometimes happens one time or multiple times before they actually pass away.
I prayed that it wouldn’t happen again and that if it was her time then she
would go.  She began to get fussy and whimper.
We medicated her so she could be comfortable.

It was at 7:06 am on January 3rd
that Addison finally took her last breath. I sat holding her for the next 8
hours. I refused to leave. I didn’t want to walk out of that hospital without
her. When I came in 18 days earlier I had no idea I would walk out without my
baby. On January 6th I buried my angel. It was the last time I got
to touch her and kiss her. Not a day goes by that I don’t think about her, but
I now know it was God’s plan and that she will always be with me as long as I
kept her memory alive.



Please see the Trisomy 13 page for more trisomy 13 journeys, resources, and more. 

 

 

mamasorganizedchaos

Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

This blog is intended to be our story and our ideas- including successes and failures along the way. You can also find me published at Today Parenting, Her View From Home, and VitamedMD. Follow me on Facebook and Pinterest for more parenting tips and to hear more about our journey!