Saturday, August 8, 2009


For two weeks now, Averi has been pooping bright, red blood. When I called her pediatrician last week, he told me that it was most likely due to a dairy intolerance. He said to stop eating anything with milk in it and to give her a week to heal.
Of course, instead of slowly getting better, it got worse. By Wednesday she had bloody, orange liquid coming out of her tush that smelled horrific and she wouldn’t stop crying. (Gross, I know, but it gets even better.) Needless to say, we went to the doctor the next day.
Dr. Stevens, her pediatrician, tested the diapers I brought in, said that it was indeed blood, and that she has some sort of infection. He then handed me one pair of gloves, three popsicle sticks, 5 containers, and told me to fill them all with poop so that they could be tested for anything he could think of that could be the problem. Great, that sounds fun!
So we have spent the last two days scraping poop out of diapers and are not even halfway done. Have you ever tried to get diarrhea out of a diaper and into a cup? Diapers are much more absorbent than I thought.
I kid you not, we have resorted to: putting saran wrap in her diaper (it just stuck to itself), putting her diaper on inside out (no poop, just pee all over our bed), scraping her butt with the container just to get a few drops, scraping the changing table with a popsicle stick to get poop that came out while I was trying to salvage poop elsewhere, and even taping a bag to her back side in hopes that she will poop into the bag before peeing which makes the tape loose it’s stick.
Meanwhile, Averi still feels horrible and we still don’t know what is wrong.

Just because every post needs a pic. :)

In the midst of all that, we finally made it to the audiologist yesterday. After keeping a crying baby awake for too long, Averi slept wonderfully for the hour long tests. Her left ear passed wonderfully, which we already knew. Her right ear still isn’t picking up high and low frequencies as well as it should be. Hopefully this is due to the fluid that is behind her right eardrum. We will find out what needs to be done when we go to the ENT docs on the 31st. Fortunately, we already had an appointment to see them for her tracheal malacia.

Tuesday, August 4, 2009

Waiting for Monday

Everything always makes better sense in hindsight. The next few days consisted of a lot of waiting…and thinking. I had asked Dan to give me a blessing twice during the pregnancy, once after my preterm labor at 33 weeks and once right before delivery. I had asked for both of them in the hopes of hearing that everything was going to be fine with the baby and that I didn’t need to worry. Instead, I heard phrases like, “there will be minimal complications,” “Heavenly Father is aware of you,” and “you have an understanding of the plan of salvation.” At the time, not much comfort was found, but after Averi’s arrival it made complete sense.

Since meeting Dan and seeing how well he worked with Matthew (a young boy with Fragile X) and other mentally disabled people at his job in Utah, I have always felt that we would be blessed with a special child of our own. These things helped us find comfort as we tip-toed around just telling our families until the official chromosomal results came back.
As Monday drew near we started hearing more things that could be wrong with Averi. Her blood work was really off. There were lots of immature blood cells, too many white blood cells, and not enough platelets, which are used for clotting. More blood work was taken every day to ensure that her platelets were still barely high enough to not need a transfusion. There was also a murmur in her heart. These were all things that would make better sense if she had Down Syndrome.It was interesting how even the doctors weren’t convinced that she had Downs. Everyone who came to visit her said they couldn’t see it. I had to keep explaining that I only noticed it when her eyes were open, which doesn’t happen much for a newborn. One of the doctors even told us that she could have what’s called Mosaic, where only some of her cells have the extra chromosome.Finally, Monday afternoon came and Dr. Davis, another neonatologist, came into my room to tell us that the results had come back positive, Averi had Down Syndrome. We already knew, but it was good to finally have that conformation. Nurses and doctors kept hovering, waiting for us to react, but it never came. I cannot explain why, but we never really experienced anything but acceptance, and a little bit of sorrow for what she might miss out on later in life.
The next step was finding a way to tell people. Averi (by now she finally had a name) was our beautiful baby and there was so much more to her. It couldn’t go without being said but it didn’t need to be the only thing people knew about her either.

Again in hindsight, I now realize that our instant love and acceptance of her was crucial if we were going to be able to handle her medical problems that would quickly start to show up.

Monday, August 3, 2009

May 1, 2009: Happy Birthday!

The moment I saw those gorgeous almond-shaped eyes, I knew Averi had Down Syndrome.
You’d think I would have been scared or in denial, but I was completely calm (maybe that had something to do with the anesthesia) and worried about her not breathing well. As they took my second baby away to the NICU and rolled me in to the recovery room, I looked at Dan and casually said, “Did you notice anything about her eyes?” He had been running around the operating room taking pictures and looking at my uteri that Dr. Arora had lay on my stomach and said he didn’t notice anything. I didn’t want to worry him for no reason so I left it at that.Hours later I still sat in my hospital bed trying to shake the dizziness and itching so I could go see “Baby Girl Fisher” and hold her for the first time. Dan and I were talking to my nurse, Joe, when there was a knock on the door. Dr. Isbel, the neonatologist, walked in and started asking peculiar questions. “Did you notice that her head was extra floppy?” “Did you notice the crease in her hand or the thickness of her neck?” “Does she look like your other daughter?”The last question affirmed what I already knew. “Her eyes,” was all I could say. She then explained that she thought our baby had Down Syndrome and that she was sending some blood to Nationwide Children’s Hospital for chromosomal testing and we wouldn’t know the results until Monday (it was Friday).

I said okay, assured her I was fine, told the nurse I’d call if I needed anything, and turned to Dan. That’s when I realized that he had tears streaming down his face. I had already accepted this news before it was given, but this was a surprise for him. I wanted to do something for him but I couldn’t get out of bed. I insisted that he come lie down with me and we held each other for a long time. I finally got the courage to ask him if he was sad. “No,” he said, “I just know that she is where she’s supposed to be.”

We laughed at the fact that he couldn’t stop crying and that he was making me cry. Then we shared a silent moment where we looked each other in the eyes and agreed that this special spirit had been sent to our family for a reason.