Macy was finally up to 4 lbs.
We were so excited when we came in to the NICU to see her sleeping in a big girl
bed and out of the isolette. I met
with the NICU doctor to discuss what we were waiting for in order to be
discharged. She said we were waiting
on Macy to grow some more (they wanted her to be closer to 5 lbs.).
One day while a nurse was giving Macy her bath she noticed an area in her groin that she brought to the attention of a doctor. The doctor checked her out and said it definitely was a inguinal hernia. It was bilateral, which means on both sides. An inguinal hernia is when a small piece of bowel pushes through the wall of the abdomen. The fix for it was surgery.
So before we could head home she needed surgery. She also needed to slow down on the amounts of times she de-sated (oxygen
drop) in a day. Those were
understandable, but we just really wanted to get her home. We were sick of the hospital, sick of
doctors, and sick of tests. We just wanted to take our daughter home and start
our lives as a family.
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The surgeons finally met with us to schedule surgery for
her hernia. I was very nervous because
Macy was only about 4 lbs. 4 oz. She
just seemed too little to be having surgery.
The surgeons assured us that Macy would be fine, and that is was necessary
for this surgery to take place.
This was it! Once we
got this hernia fixed, we were in the clear.
I was finally seeing a light at the end of the tunnel. Jeremy and I talked about it every night
before we fell asleep. He had notified
his bosses that he would be taking vacation soon to spend Macy’s first week
at home. Little did I know, those were
not the plans God had in store for us.
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On surgery day, we met with the surgeon and anesthesiologist. They told us that this was a simple surgery that wouldn’t last too long. They said they would take good care of her. Soon after, the nurses came in and got Macy. We kissed and hugged her. It was a horrible feeling having someone take your child from you for surgery. This was our first, but definitely not last surgery.
Jeremy, my mother-in-law, and I went to the Day Surgery waiting area. We were going to wait for the nurse to come around with updates before we went to get some lunch. Before she could come around for an update, the phone rang. The receptionist told us that they wanted to speak with one of us, so I got on the phone. The surgeon said, “We had a hard time getting a breathing tube in. After numerous attempts, we got the smallest-made tube in. We need your permission to have an ENT (ear-nose-throat doctor) send a scope down to see what is going on.” I of course agreed.
I had a funny feeling. It was the same feeling I’d had in my stomach all morning long. It was this nervous, “something just isn’t right” feeling. 15 minutes had gone by so we started thinking that things must have been fine. That is when I saw them. Two men in white coats were walking toward the waiting area caring pamphlets and papers. I kept thinking please don't let them be here for us! That feeling in my stomach got heavier when I realized that one of them was Macy’s surgeon.
This can’t be happening. This is not happening. They are not coming for us. Those were the thoughts running through my head, but I was wrong. They were coming for us. They sat down and simply told us the truth. They sent a scope down to see why it had been so difficult to get the breathing tubes down. That is when they saw that Macy had a narrowed trachea (airway). The ENT, Dr. Miyamoto, stated that he thought about performing corrective surgery to make it larger today, but all the doctors in the room were against it. He said she was just too tiny, and had a heart that wasn’t repaired.
The next moment is one that I would like to say was a blur, but it wasn’t. I can remember every second of it. I can remember the feelings I was feeling all over my body. Dr. Miyamoto said, “We feel at this time that they best thing for Macy would be to perform a tracheotomy and put a trach in.” “No, no, no.” I was not going to have that for my daughter. This was not happening. They pulled out the pictures they had taken, they pulled out information and diagrams. They must have thought this stuff would help, but it just made matters worse.
I started sobbing. I told them that there must be another way. We were not letting her have a trach. I had experience with trachs. They were horrible. When I was in second grade, I became a buddy to a classmate who had one. I remembered all the things that came along with it, oxygen, suction machines, no speaking, etc. No!
I cried and sobbed telling them that they needed to fix her NOW.....they had to do something else. They kept insisting that this was the only way. I can be very demanding and stubborn. In that moment I was both. Honestly, I don't even believe that I could think straight. They said she was stable at the moment, but they wanted us to sign the papers so they could put the trach in. I refused. I crossed my arms like a child and said they must do something else. I can only imagine what they thought of me. I look back now, and I feel so bad for my behavior. I just didn't want this for my child.
With tears in his eyes, knowing it was against my wishes, Jeremy signed those papers. I don't know what he was feeling, I don't know what my mother-in-law was thinking, but my whole world, my life, my dream for Macy felt like it was gone. I could feel my heart breaking; I felt as if my body was shutting down. As those doctors walked away, I felt as if I wanted to chase them down, hit them, and hurt them. They had torn apart our lives. I didn’t look at Jeremy. I didn’t look at Lisa. I was in my own world. It was not a world I wanted to be a part of.
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