I have NEEDED to write for sometime now. Not only should I have written, but I have emotionally needed to. Let me say that I hate roller-coasters. I don't go on them- I take photos of David riding them with his arms up over his head. He got me on Space Mountain when we went to Disney back in 2002 because he got the concept of that ride mixed up with the Epcot Dome ride. When it stopped he said, "Did you like it?" I said, "Didn't you hear me screaming?" He looked perplexed and said, "I thought you were screaming because you liked it!" I said, "No! I was screaming because I was terrified." My eyes had been clenched so tightly that tears had been forced down my cheeks. Unwillingly, I have been riding a roller-coaster for the past month. Tears have again been working their way down my cheeks.
Back on February 18th, a few days after Mollie turned 6 months-old, she caught the stomach bug that David and I had both had the night of February 15th. We thought she'd throw-up a few times and be just fine. That was a Thursday morning. This also corresponded with her 6 month doctor's visit. At the appointment, her doctor thought she didn't need her Zantac for Reflux anymore, so he told us to stop giving it to her. While she was there, she threw-up her Rotovirus vaccine. That afternoon she started throwing up. By the evening she seemed better. Friday night, she was very fussy.
Saturday morning came, and I nursed Mollie in bed next to me. She threw-up EVERYTHING she had just eaten and freaked out. With that began a horrendous saga. She was miserable all day. We had already given her pedialyte on Thursday, so we started it again. We saw her doctor on Saturday. He had us keep giving her pedialyte every 15 minutes- milk would not stay down. Sunday, she just laid in our arms wanting to be rocked. The same went for Monday. She couldn't keep milk down. Monday night we went back to see her doctor at 6:30 PM. He admitted her into Athens Regional Hospital. The poor thing just laid in my arms as we waited for her room.
It was incredibly strange to walk back into the hospital Mollie was born in just 6 months prior with her so ill. I looked up at the window of the room I labored in. A camera flashed. So many memories flashed for me.
We were so sure that Mollie would get her doctor-ordered IV in a few hours, and we would be on our way home. Our Monday night trip to ARMC didn't end until Friday afternoon. Mollie had two IV's, four heel pricks, and an x-ray. They thought she had Hepatitis and even CMV due to elevated liver enzymes. She slept in a bed with me, which totally destroyed being able to sleep alone for about 10 days. She was constantly woken up, and I wasn't able to nurse her until Friday morning. (Might I add that using a pump for about a week straight about 6-7 times a day is MISERABLY PAINFUL.) I was so happy to be able to feed my baby again. I was terrified that she had forgotten how to nurse. It was Thursday when a nurse finally listened to our speculation that Mollie's reflux was acting up. Prilosec saved the day! She was back to her giggly, wild self so soon after that.
After being in the hospital, Mollie's doctor wanted us to get her liver enzymes rechecked to make sure they went back down. I was sure that they had, so I almost didn't take her to get her heels pricked again. We went to LabCorp, where the ARMC nurse said we could go, waited 30 minutes, and found out we had to go to a Regional First Care Lab. I had been to the one on Oglethorpe before when I needed to get a drug test for our adoption application. I liked it. Mollie was hungry and getting a little fussy, but I was happy to go somewhere I had had a positive experience.
When the nurse called Mollie's name, she said "Only one parent." This freaked me out because David was planning on singing to Mollie and it took 4 of us to hold her at the hospital in order to draw blood. I went back and the technician had me sit with Mollie in one of those blood-drawing chairs. I said, "Aren't you going to prick her heel?" She proceeded to prep her arm. To make the story shorter, she "felt a vein", she missed the vein, she let David come back to the room eventually, David looked at the situation with an expression of "WTF?", she removed the needle upon my firm direction, we noticed her "Student" name tag, she got someone else to prick Mollie's heel, and Mollie got very very very scared and upset. Not so happy with the people at Regional First Care. Dear RFC, please send experienced technicians to deal with babies in the future.
Here is where our roller-coaster starts to accelerate at a rapid pace. On Monday, David came home and said, "I had a message from Mollie's doctor- they want to go over her test results." From my experience with lots of docs for my own health issues, I know that they will tell you your test results over the phone if nothing is wrong. I felt queasy. We got worked in the next day at 4:10.
Mollie's doctor came in and said that her liver enzymes were still elevated. My brain thought- elevated like maybe 10-15? He pointed at the sheet of paper with her test results. He pointed to a number around 15 and said that they should be somewhere around there. Then he pointed at another number that was around 160. "Her enzymes are still high, and we want to find out why." A paralyzing numbness started seeping down my spine. He went on to say that high liver enzymes usually mean Hepatitis, but that those tests in the hospital were already negative. So, he said he would recheck her liver enzymes in another week, hoping they would go down. (In the hospital, he thought they were high from all the vomiting she had done while ill.) If her enzymes are high in a week, we'll need to go see a Pediatric GI doctor. Here we go, I thought. "He'll check her out and see if he can figure out what's going on." He said, "If worse comes to worst, he'll do a liver biopsy." A what? Needles, anesthesia, surgery on my 7 month-old? He then started describing Alpha-1 Antitrypsin Deficiency (http://www.nhlbi.nih.gov/health/dci/Diseases/aat/aat_whatis.html), which essentially causes the liver to destroy itself and the lungs. Individuals usually get COPD or Emphysema. It isn't usually caught until an individual is older. Children with it generally have respiratory issues such as asthma. "How do you get that?" I asked. "Both parents have to have a recessive gene." I didn't know the gravity of this illness until I got home and it sunk in.
Would my child need a lung transplant? Can I give her part of my liver? I wondered and cried. Will she be able to run around and play with other kids? Will she be hooked up to an oxygen tank? I know that the doctor said it causes weight loss- will she be tiny? (She is just 14 pounds, 9.5 ounces. She was 14. 7 when she went into the hospital after a week of not eating. No weight gain.) I wonder if her liver is in there destroying her tiny organs while I hold her. Why can't I just scream at it to stop? I would give her my heart right out of my chest if it would make her better. All my life, I have wanted a child. After years of heart ache, prayers, an adoption plan, and medication, she got sent to us. She is a gift. She always will be. This just wasn't part of the plan.
Please pray for us. Please pray that her liver enzymes go down when she is tested again on the 24th. Please pray for us to find continued joy. Please just pray. Thank you.