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Uphill Battle

The Start of a Year-Long Nightmare

It was March 1, 2011, and I was 18 years old.

My first-born child was only one month old. She laid in her swing, fussing while half asleep, when she began crying hysterically. Being a new mother, I assumed she could only be hungry or need a change. 

However, she did not need to be changed and only took a few sips from her bottle. This was unusual behavior, coming from a child who ate four to six ounces in one sitting. I held her in my arms as she continued to cry - my older sister and I both unable to soothe her. Finally, I called my mother and begged her to come help me. She was an overnight-shift registered nurse at this time, and she initially insisted there must be a way to calm her down. So, I hung up the phone and tried again to feed my very unhappy infant. 

Out of nowhere, she projectile-vomitted all over me, herself, and the chair we sat in.

This was not traditional baby spit up. She then began crying harder and louder and I called my mom again.

"Mom, PLEASE come home!" I pleaded with her. "She's throwing up everywhere and she won't stop crying!" I was desperate to help her, but had no idea what I was doing.

She then agreed to come home. 

She worked a town over at that time, so it took about 25 minutes, in which I sat holding my screaming child. As she walked in the door, she retrieved my daughter from my arms and cuddled her, trying to calm her down as my sister and I had both done.

"She feels hot," she said to me, looking concerned.

"Well, she has been crying this whole time," I responded, thinking her elevated temperature stemmed from her non-stop crying. 

"No..." she started, "Get the thermometer."

I was confused and initially felt this procedure was a waste of time; after all, I was still new at parenting and she'd been crying for several hours. 

Reluctantly, I gave her the thermometer. She took her temperature and then started rushing me to grab things. "Get her bag, she needs to go to the ER!"

I was still confused at this point, so I asked her why. She responded that my daughter's temperature was over 103 degrees. 

I thought to myself, what's the big deal? I have had higher temperatures than that. Regardless, we took her straight to the ER and my mother informed me babies are not supposed to have temperatures. This new knowledge confused me even more.

Why not? Are they not humans as well?

Upon arriving at the ER, she was taken straight back and had blood taken from her. These results came back normal. She was then given a catheter to retrieve a urine sample. When this result came back normal she was given a lumbar puncture. I sat outside the room with my mom crying. She was in there screaming while they poked her spine with a needle. They would not let me or my mom come in, saying it was a sterile environment. 

I felt completely helpless and did not even understand what the procedure was for or why they were torturing her this way. It felt like torture to me. I did not understand medical terminology. I did not understand why they suddenly felt this was necessary. When it was over, I laid in the bed and cuddled her, and we fell asleep. I was so happy she was finally able to sleep. At this point, it's almost seven in the morning, and they came in with her results. 

She had E. coli in her blood, and if we had not brought her in that night, she may have been dead by morning. 

Suddenly, I did not feel like taking her temperature the night before was such a waste of time. I was incredibly dumbfounded and relieved I had called my mother and she knew something was wrong. I didn't. How could I? 

Although, I was also upset that I didn't know. Aren't we supposed to get these motherly instincts? I felt like mine never "came in" at that point. 

Next thing I know, we are being sent an hour away to another hospital, where she would have to be admitted and see a specialist. She was in the NICU at this hospital, and a doctor came in wanting to know exactly what we had just experienced. I was so upset for my poor child, and upset with myself for not knowing something was wrong with her that I could not even look at him as I answered all his questions. I stared at my daughter the whole time. I was so in love with her and I still could not believe I was that close to losing her. So, I stared at her. I didn't ever want to forget her precious face.

My mom said to me, "Please make eye contact with the doctor next time." I looked at her with tears still in my eyes. I said, "I wasn't trying to be rude. She just doesn't deserve this."

Another doctor came in at that point, and my mom told this doctor to call the specialist, as my daughter had been diagnosed with hydronephrosis.

I was confused again.

What was that, and who said she was diagnosed with that? 

Hydronephrosis, by definition, is excess fluid caused by kidney reflux. It came to be that my daughter's ureters were too wide, causing her urine to reflux. They confirmed this with a kidney ultrasound, that showed her bladder was hardly draining due to the reflux. She was given another test similar to an X-ray, but has less radiation. With this test, they wanted to see how much reflux there was, so she was given a catheter with some orange fluid to make the urine show up clear.

The urologist later told me healthy, normal kidneys are at "stage one" out of five, while her left was at a four and her right was at a five. The picture of the ultrasound did not show normal kidneys, but extremely inflamed kidneys.

She was admitted there for three weeks, where her reflux was measured, she was given an IV, and put on a variety of oral suspensions to help control the reflux.

At this point, I am thinking, "Finally. She has medications. It's over."

But, it was far from over. She was given four different IV's, the final one being a PICC line, as she kept moving enough to ruin the sight on the others. The doctor thought he had found the perfect combinations, and at the end of the third week, she was finally discharged since her fever was under control. 

However, exactly two weeks after discharge, she was sent to another hospital and hospitalized again, this time for only three days and given the same routine. The urologist said she would need surgery at age two to narrow her ureters if this persisted.

She was discharged, and sent to see the urologist every month for the first year of her life. I was scared every time, as the results always came back the same:

Her kidneys were still stages four and five.

Finally, at age one and a half, after being on a steady medication regime, she had her final appointment with the urologist, where he reported her ureter had closed on its own as he hoped it would, and her kidneys were FINALLY at stage one. 

I had never felt such relief in my life. 

She was six months away from needing surgery, and I finally felt like her body wasn't betraying her anymore.

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