I wanted to start off this post by expressing my gratitude
for all of the support that was shown to my family after sharing Anthony’s
birth story. That post was probably one of the hardest things for me to write
in my life. I put my heart out on the line, and I was unsure how it would be
received. But now, it feels like a
weight is lifted off of my shoulders, I don’t have to hide anymore. Anthony’s
story is out there for all to see, and I can move on with living life.
Honestly, I wasn’t expecting the rush of emails, messages, and comments when I
published the post. I just sat back and watched it all happen. I felt more love
and support than I knew was possible. People that I haven’t talked to in years
shared my story with their friends, and wrote such kind things about it. That
meant the world to me. It amazed me that so many people even cared to take the
time to read it. I felt like I really accomplished what I set out to do, in
just one post. I used to fear that Anthony wouldn’t be accepted for who he is,
but not anymore. He is being brought up in a time where people are more
supportive than I realized. That wasn’t always the case. Children and adults
with DS, or any disability for that matter, were not always accepted with open
arms by the world. I am so thankful that Anthony does not have to experience
that. I know that it’s still not perfect, but the world is changing, that’s for
sure! It was amazing to see such an
outpouring of love. I am not alone in this journey. Thank you for showing me
that!
Hospital Stay
Anthony was taken to the NICU around midnight. We didn’t even
have the first night together as a family. I really needed that, to heal. I felt like I was living inside a snow globe.
My world was completely shaken and turned upside down after finding out Anthony’s
Down Syndrome diagnosis. Once everything seemed like it was starting to settle
back into place… someone came in our room and said NOPE let’s give it a few
more shakes. We couldn’t catch a break. Scratch that… my poor baby Anthony couldn’t
catch a break. In all honesty, I am glad that the nurse working in our room
took Anthony when she did. She was able to see things that I couldn’t. I am not
a nurse, and had no idea that my son was struggling to breathe due to the low
muscle tone in his neck (an indicator for DS). I didn’t know that he couldn’t regulate
his temperature, or that he had a hard time grasping the combination of eating,
sucking, and swallowing.
As if taking him away wasn’t enough for one night, we also
were told that he was going to be receiving an ECHO on his heart sometime
tomorrow. The nurse told us a very scary statistic: 50 % of babies born with
Down Syndrome have some sort of heart defect. There it goes again, a few more
shakes. Our world just couldn’t settle. How many more shakes could we take
before breaking completely!?
It was hard to wrap my head around everything that had
happened in one day. Now we had another scary, possibly life changing, obstacle
thrown in our faces. I felt like I was slipping further away from reality. I
needed a life-line. I needed something to go right. We had to sleep that first
night without our son, it was heartbreaking. As a mother, it was a strange
feeling. I was only a “mother” for a few hours, then it was back to just being
me and my husband again. We wouldn’t be waking up to argue over whose turn it
was to change the diaper. Instead, we were up all night for a different reason.
We were so completely overwhelmed with worry for our son. This poor guy was new
to this world, he was so small, and he had already been through so much. He
just needed his mom, and I needed him.
During our hospital stay we were constantly in the NICU
visiting Anthony. My own recovery quickly took a back seat to my son. Who has
time to worry about that when you have a baby that needs you? It was so hard to
see Anthony in the NICU under the heat lamp, hooked up to tons of monitors,
with IVs in his hand, a feeding tube down his throat, air tubes in his nose, and
prick marks on his heels. My poor little baby. I wanted to make it all go away.
I just wanted to snuggle him and let him know that it was going to be okay.
While we waited for his ECHO test to be administered,
visitors trickled in to see the new addition to the family. I was glad they
were there, don’t get me wrong, but I felt like I couldn’t look anyone in the
eye. It was way too painful. I didn’t want to face what had happened, and what
was happening now. I just wanted it to be me, Joe, and Anthony in our own
little safe bubble.
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| My precious baby's first day in the NICU |
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| Family Photo! |
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| He loves his boy so much |
The ECHO test results came back when Joe was with visitors
seeing Anthony, and I was in the hospital room resting. When Joe opened our door,
he looked lighter… like he was happy. Happy. That was an emotion I wasn’t too
familiar recently. He looked at me, smiled, and said that the doctor told him
she had never seen such a strong heart. Joe said that Anthony’s heart was perfect. I couldn’t believe it. I smiled
for the first time, in what seemed like a long time. I picked up the phone and started to call
family, I was so excited to finally give some good news to them. I felt happy, so happy and lucky! I know that
not every family in our situation gets the same great news that we received. I
honestly don’t know if I would have been strong enough to get bad news. Someone
was looking out for us.
Getting this test result back seemed to set the tone for
Anthony’s stay in the NICU. He was out to prove everyone wrong. He was a strong
little boy, and he made us all so proud with his ability to overcome every
health obstacle that he was faced with.
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| Our little corner of the NICU |
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| My little glow worm! Getting his light treatment for jaundice. |
Leaving Without Baby
Saturday came a lot faster than I would have liked. I dreaded
Saturday. It meant that we were leaving, we had to check out of the hospital.
We had to take all of the flowers, balloons, cards and go. We had to take everything
but our baby. Saying goodbye to Anthony made me sick to my stomach. Joe would have
to drag me out because I sure wasn’t going to leave my son willingly. I was
leaving a piece of me at that hospital, and an important piece of me at that…my
heart. That drive home was silent, the whole way. I just sat there feeling bad
for myself. This wasn’t how I pictured coming home from the hospital. I didn’t have
to sit in the back, and I didn’t have to remind Joe to drive carefully. Instead,
the car seat was empty and with every minute there became a bigger distance
between me and Anthony.
When we pulled up to the house I almost couldn’t look, it
was too heartbreaking. There was a stork on our lawn (that my family bought,
and I loved it so much) that told the whole neighborhood about Anthony’s
arrival. I wanted to just run inside. I didn’t want to have to explain why we didn’t
have our son to anyone.
I was so thankful to have had the support of our families. I don’t think I would have eaten if it wasn’t for
all of the amazing home cooked meals we were given.
Pack my bags, I’m moving in
The uncertainty of when we would be bringing Anthony home
killed me. I felt like I lived at the hospital. People would say to me “I know
he is in the NICU, but you’re pretty lucky that you get so much time to rest
and heal before bringing him home. Enjoy all of the sleep!” Sleep? Were they
crazy? I got less sleep than I would if my baby was home with me. Every time I
would leave my son’s side to come home during a nurse shift change I felt
guilty. I felt like I was a bad mom, and I was guilty I couldn’t be there for
him more. I was guilty that the nurses seemed to know my baby more than I did.
I didn’t want him to forget who I was. Because I was still recovering, I wasn’t
allowed to drive myself to the hospital. If I could, I seriously would have
moved in. I would look at his little
face, and it would crush my heart to leave. I felt like I was abandoning him.
He needed me, I think. In all actuality,
I needed him a whole lot more. I was only okay when I was with him. When I was “home”
sitting alone, I felt so empty. I would cry for endless hours because I just
wanted to hold my son. I wanted to make sure he was okay. I longed to hold his
hand through it all and kiss his little lips. I would literally drive myself
crazy. I think google should be illegal when you’re upset. I swear I only found
such negative and horrible things during my searches. Once again, I was looking
way too far into the future. I would get upset learning about all of the health
concerns that come with having Down Syndrome, when instead I should have been
focusing on the moment at hand. But, everything was so different when I was
able to be with Anthony. He took all of those worries and concerns away. He
just made me happy. I felt like I could be myself again.
“Home is wherever I’m with you…”
I just wanted him to get strong enough to be able to come
home. I would call every morning to check how he made out through the night.
Every day he seemed to conquer something new. I was so proud of my baby boy, he was stronger
than everyone thought. He was out to prove the world wrong.
As hard as it was for us to have Anthony away in the NICU, I
know it was just as hard for our families. They wanted to see him and bond with
him. It was so wonderful that everyone wanted to visit; it reminded me that
Anthony is so lucky to be surrounded by unconditional love! The only problem
was, we had big families! The NICU rule was you could only have one visitor at
a time with one parent. So, that meant that when visitors came, we would lose
our family bonding time because Joe and I couldn’t be in there together. It was
hard, but I had to suck it up and share my son. I just felt like running away
with him because I didn’t have enough time to bond with him myself, and I was
his mother.
I had a break down when we had visitors and I had to wait
outside while Joe was in the room with them. It was a “run away, sink down on
the hospital floor, ugly cry” kind of break down. I remember looking in at them
through the window, and I just lost it. I couldn’t believe that I had to stare
at my son through glass, when I so badly needed to hold and be with him as much
as I could. It just didn’t seem fair.
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| Family watching Anthony through the window, waiting their turn to come in. |
It worked out for Joe’s schedule to go every night around
9:30. Those were the nights I loved the most. They felt the most normal, like
we were any other family getting our son ready for bed. We started to form a
nighttime routine. We would change his diaper, I would feed him, we would wrap
him up, and read him a story. Then it would be time to “tuck him in”. I hated
leaving, but I knew he was in great hands. We really loved all of the staff
that worked in the NICU. They formed relationships with all of the families and
most importantly with the babies. That made me feel safe. They were wonderful people
that taught us a lot about how to care for a baby. We were definitely prepared
to take Anthony home, whenever he was ready.
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| A bed time story! |
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| Daddy taking a turn to feed Anthony |
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| Good night kisses from Mommy |
One of the last things we were waiting for was his genetic test
results back. We knew he had Down Syndrome, but I think we just needed to hear
it confirmed by a test before we told anyone outside of our family. During our
time at the NICU we also learned that there are three different types of Down
Syndrome. We were curious, and very nervous, to find out which type Anthony
had.
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Down syndrome (or Trisomy 21) accounts for
ninety-five percent of people with Down syndrome. A child with Trisomy 21 has
three copies of chromosome 21, rather than the normal pair.
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Translocation Down syndrome accounts for just three to four percent of people with Down
syndrome. Translocation is what people are referring to if they say that the
condition is inherited, because usually one parent is a carrier. The extra #21
chromosome is present, but attached to a different chromosome in the egg or
sperm. The clinical features of people with Translocation Down syndrome are
indistinguishable from those with Trisomy 21.
·
Mosaic Down syndrome accounts for less
than one percent of all people with Down syndrome. Children born with Mosaic
Down syndrome have some cells with three copies of chromosome 21 and some cells
that have the usual pair. Clinically, babies born with Mosaic Down syndrome can
have the same features and health problems seen in babies born with Trisomy 21
or Translocation Down syndrome.However, the presence of cells with the normal
number of chromosomes may result in fewer characteristics of Down syndrome.
Joe and I have always had dreams of having more than one
child. We were nervous that Anthony had the possibility of having Translocation
Down Syndrome. That, in so many words, would mean that the rest of our children
would have DS too. (At least that is how I understood it from what the doctor
said). When the test results came back that Anthony had the most common form of
Down Syndrome, I was relieved, but also sad. It was almost like hearing it
again for the first time. Joe and I
tried not to talk about it a lot; we wanted to just enjoy our son without
labeling him. Honestly, we couldn’t always see the physical characteristics of
Down Syndrome in Anthony. To us, he was just our adorable baby and that was
that.
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| Seriously, how cute is that face! Makes a mama's heart melt! |
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| Hellllooo ladies! |
Coming Home
Two weeks passed. He was doing well without the feeding
tube, was off the oxygen, and passed his car seat test (woohoo I was one proud
mama!). The only thing we had to worry about was making sure we positioned him
in a way that did not close off his airway. That meant having to put a neck
roll behind him when he slept, and watching when we held him that his chin didn’t
touch his chest. We were just waiting until the day we got the call that we
were allowed to bring him home.
Finally the day came,
August 8th. I couldn’t get to the hospital fast enough. I just
wanted to bring my baby home. That car ride home was everything I expected it
to be. I was in the back seat, holding his hand, and was on edge when any car
would come too close! We had some precious cargo! Joe did a great job getting
us all home in one piece, without having a nervous breakdown!
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| Getting ready to finally leave the NICU |
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| Daddy being a very careful driver |
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| Happy to be on his way home with Mommy and Daddy |
The next few weeks were so exhausting. We literally had
visitors every single day. That was so hard for us, because even though Anthony
was already 2 weeks old, it didn’t mean that we had him home for two weeks. I
was still trying to adjust to my mommy role. We were trying to play catch up
and make up for lost time. It was really tiring having to entertain so much,
but it was nice to see how many people cared for this little man. Our hearts were full. We were finally a family.
Yes, there will be hard times ahead, but I know we can face anything together
as a family. I love my life, and I love my family more than anything in this
world. I feel really lucky and blessed to be Anthony’s Mommy. J
This little man is going to change the world. I can just
feel it.
“Lend me your hand and we’ll conquer them all... Lend me
your eyes I can change what you see…”
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