Wednesday, October 13, 2010

"There is something wrong with her liver?"

When you wake up in the morning, you think "hey, today is going to be like any other day." I am going to get dressed, get the kids off to school, and live my life like I do every day. I will never wake up thinking that again. You never know how your life can veer off the road that you have traveled for days. You never know what each day is going to bring.

We took Lyra to the doctor for some boogers in her nose and some light sneezing. We wanted to make sure she wasn't getting sick. Just a cold. That's what we thought the doctor would tell us. We thought we would hear "give her lots of fluids and keep her comfy."

While we were waiting for the doctor, the nurse weighed Lyra, took her temp and measured her.  I changed her so that she could be weighed and commented on how her stool looked like the color of the sharps box.  I showed it to the nurse.  She didn't act like it was anything out of the ordinary.

When her doctor came in, he looked at her belly and her diaper.  I thought that was weird because we were there for a cold.  Why was he asking questions about her poop?  He also was looking at her veins in her abdomen, and how they were all blue and sticking out.  Finally he said,  "I think there is something wrong with her liver and you have to go to Portland today to see a specialist."

The urgency of us having to go all the way to Portland that day struck something in our heart.  He said "Be prepared for the fact that she is going to be admitted."  Immediately after he left the room, I started googling liver problems in infants on our phone.  I came across Biliary Atresia and started telling Daddy about it.  I found so much information on it, and she had so many symptoms of it, that I was starting to scare her Daddy with the very real possibility that our little girl has a life threating disease and that she could possibly die.

We finally made it to a GI specialist in Portland.  The doctor looked her over and knew immediately what she had.  He didn't really tell us what it was because the diagnosis had not been confirmed thru testing yet.  He felt her belly and could tell that her liver was large just by feeling it.

He told us that she was going to be admitted, and that when he assembled her team, that he was going to come back and get us.  Waiting in that room was so hard.  I started facebooking to let my friends know that Lyra was in trouble.

We were very scared waiting in that little room.

Lyra didn't seem to mind...she slept in her Daddy's arms.

We were finally able to go over to Barbara Bush Children's Hospital.  They had assembled her team.  When we were waiting in admissions, the lady was very rude to us and acted like we were bothering her because she had to work and walk back to tell someone we were there. We were thinking "how can this lady treat us like this when we just got the news that our baby was seriously ill?"  Why doesn't the world know what we are going thru?   The woman that actually did the intake was very nice to us and even helped us find our way to the BBCH wing on the 6th floor.

When we arrived on the pediatric floor, we were immediately swarmed by a group of people.  Names and titles were being pushed on us and we had no idea why we were being introduced to so many people.  We immediately noticed that the staff and students were staring at us whispering.  That's when we realized that our little Lyra was really special.  They were also looking at us with such pity in their eyes.  It frightened us that we could see the pity in their faces.

People kept asking us tons of questions.  They would ask us "Why didn't you notice that she was yellow?"  "How could you not know something was wrong with her?"  "When did her poop turn white?"  We were trying to process the fact that our little girl was in this hospital and it almost felt like we were being attacked and accused of letting our baby get to the point where she was dying.  That was a horrible feeling.  Honestly, who remembers when their childs poop turns a different color?

We went to ultrasound and were followed by a group of residents, student nurses, nurses, and attending physicians.  She had her own fan club! Lyra was not happy to lay down during the ultrasound, and screamed the entire time.  They told us how her liver was enlarged and said they could not find her gallbladder or her spleen.  

After the ultrasound, Lyra was very upset and I tried to breastfeed her.  They immediately told me that Lyra could no longer breastfeed and that I would be hurting her more if I fed her.  That was like a knife in my chest.  To know that I was hurting my baby by breastfeeding her.  Breastfeeding is supposed to be the most beautiful, wonderful, and healthiest thing in the world.  How can I be hurting her?  

We finally made it back to the room and Lyra was able to take a snooze in her new crib.

She was so exhausted!

Eventually, Lyra got a bottle.  This time she got Pregestimil.  It's a formula specially made for babies with malabsorbtion problems.  Pregestimil tastes and smells aweful and Lyra was not too excited about it.

Here you can Lyra's eyes and how yellow they were.  This is a sign of her liver disease.

When Lyra got her IV, she was definitely less than excited about it.  They took her to a special room and we could hear her screaming all the way down the hall.  We didn't want to go with her because it would have broke our hearts to see her in so much pain.

We were a long way from home and totally exhausted.  But, Daddy and Lyra still got their cuddle time in.

On Friday, Lyra had a biopsy of her liver.  They stuck a needle in her belly during an ultrasound and pulled out a little piece of her liver.  With this, they would be able to confirm whether she had Biliary Atresia.  This test would also be able to tell us how significant the liver damage was.

We stayed at the hospital Wednesday and Thursday night.  On friday, we were invited to stay at the Ronald McDonald house.  I still remember walking into that house and thinking "this is not real, people like us do not stay here."   You think "our child is not really sick, this is all a bad dream and we will wake up and this will all be over."  Unfortunately, it doesn't happen like that. They show you around the house.  They show you the community food, the kitchen, the garage, the pop machines, the laundry rooms, and the bathroom and you just can't escape the reality.

We went to bed for the first time that night and just did not know what  we would wake up to in the morning. We would never know again what we would wake up to.

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