It was only several weeks into my pregnancy with Kate that I knew she was special. That there would be something different about her. Every prenatal appointment showed that our little girl was healthy and growing and we took so much comfort in knowing that she was healthy. At 34 weeks, we had a 3D ultrasound and I got to see her beautiful face. That face was so sweet and perfect and forever engraved in my mind. I found myself sneaking into the kitchen again and again within the next few weeks to see that picture hung on the refrigerator door--her face brought me so much joy.
At 37.5 weeks, after a long weekend of going into the hospital for false labor contractions and being sent home multiple times, I sat in my bed at 1:30am. In SO much pain. I was told not to come back in until my water had broken or I could no longer walk. I waited. And minutes turned into hours, decades and centuries. And each contraction got harder and harder to deal with. Finally, I woke up Craig at 3:30 and told him I was in so much pain and that we needed to go to the hospital. These contractions made it so that I couldn't walk, lay down, sit or even think.
On the way to the hospital my sweet Emery quietly hushed me as I tossed and turned. She kept whispering, "Be better, Mom." I hobbled through the doors with Craig and the girls and we were placed in a room. Several minutes later we found out that we would be able to stay. We called my mom around 4:30am and told her it was 'go time.' Amidst all of the chaos, I felt so much relief that soon I could breathe after getting an epidural.
We waited for some time and then I was wheeled across the hospital to my room. That was a very uncomfortable and long ride. After finally getting my IV put in and receiving the epidural, I was dilated to an eight and things were progressing very fast. My mom arrived with my little brother Jon and they took the girls back to our house around 6:30 to get more sleep and to wait to hear from us. By the time I was dilated to a ten just after 7:00, only half of my body was numb. They gave me a high dosage of epidural and within about ten minutes I felt relief. She was born just minutes after at 7:26. The most perfect, tiny little redhead.
I can still remember that feeling so fresh in my mind of holding her for the first time. My 5lb. 3 oz. little angel. My world was forever changed by this little girl coming into our world that beautiful Tuesday morning.
The next day and a half went really smoothly in the hospital. Her glucose levels were on the rise and we were so proud of the progress our Kate was making. Her temperament was peaceful and when she cried, she was easily consoled if Craig or I held her. We both felt right away the deepest and most amazing connection with our sweet little girl. We love her more than words can even convey.
It wasn't until Saturday afternoon that we were first made aware that something was abnormal. We received a phone call from an on-call pediatrician telling us that we needed to go to the hospital to get some lab work done. The doctor was very vague about what the testing was for but we headed to the hospital right away. Later that evening, I noticed that she was beginning to become very lethargic and was responding very differently than she was the past few days after feedings. Normally she was very alert after feeding and burping her but her arms, legs and neck were very limp and she was very sleepy. Concerned that her glucose levels were really low, we went into the emergency room after speaking with an on-call nurse at 11:30 pm.
We spent the entire night in the ER running a handful of tests. Craig stood with his arm around me as we watched, overwhelmed, as our little girl had to have an IV put in her tiny arm and be poked in her feet several times. All tests came back normal except one that they weren't able to complete and we were able to go home after our nine hour stay in the ER.
Monday was a relatively quiet day and she seemed to be on the mend. It wasn't until Tuesday when I began receiving phone calls from Primary Children's hospital, the pediatrician and the ER that I learned of the severity of the abnormal test that had come back. The doctor at Primary Children's hospital explained to me that her lab test indicated that she may have a very rare genetic disorder called VLCADD. This disorder prevents the body from converting certain fats into energy, especially between eating periods (fasting). She then explained that the symptoms of infants with VLCADD can be lethargy and muscle weakness and if untreated, can lead to seizures, severe liver damage or she could go into a coma. I was devastated.
Wednesday we spent a good part of our day at the lab completing the last of the lab work requested. It was a long and exhausting day for me and that evening after the girls were in bed and Craig sat in the front room with Kate snuggled in his arms, I went back to the room and it finally all hit me. And I sobbed.
As I sat in the dark room feeling very alone, a very distinct impression came over me that I had a decision to make. I could let fear and doubt overwhelm and paralyze me, or I could move forward in faith, knowing that our Heavenly Father has a perfect plan for our daughter and he would provide a way for us to be able to raise her and tend to her needs. I'll never forget how black and white those two options felt, and the overwhelming amount of peace that proceeded was so comforting. Like the biggest, warmest blanket completely encircling me. I have so much faith and peace in what is to come.
Thursday morning after Olivia had left for preschool, I sat with Kate in my arms and Emery snuggled into me and I was moved by so many emotions. I had so much hope for our future with our girls and I was overcome with the deepest desire to be a better mother. I knew that I needed to rise above any trials or hardships, fear and doubt and be strong for my family. I knew in that moment that my older girls and, especially Kate, would need to draw from my strength throughout their life and this was a pivotal moment for me.
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It has now been almost three weeks since finding out Kate's potential diagnosis. Her diagnosis is still not certain until we have genetic testing done but we are treating her at the present as if she has the deficiency. We will hopefully be able to have the testing done very soon and it will take about a month for us to get the results back.
Kate has been doing really well. She is growing well and continues to amaze us with her strength and sweetness. Based on her great progress the past few weeks (she had gained a pound at our two week checkup at the doctor), the doctors have so much hope for a bright future for her.
Watching Craig and the girls look into her beautiful deep blue eyes with so much love and adoration has brought me so much joy over the past four weeks. We feel immeasurably blessed to have her in our lives. She has taught us more about love, compassion and having faith in our Savior than we could have ever imagined. And we are so grateful for these first experiences that we'll never forget with her--she has truly bettered and continues to better our lives each day.
Watching Craig and the girls look into her beautiful deep blue eyes with so much love and adoration has brought me so much joy over the past four weeks. We feel immeasurably blessed to have her in our lives. She has taught us more about love, compassion and having faith in our Savior than we could have ever imagined. And we are so grateful for these first experiences that we'll never forget with her--she has truly bettered and continues to better our lives each day.
