Like so many women out there, I am a wife, mom, and do-it-all handyman, err- woman. I wanted to create a blog that can help us as women get back to what's really important. It's time to get priorities straight and make life better for ourselves and our families in these troubling times. I plan on having multiple pages to touch on each aspect of our lives- including what others expect of us, as well as the pressure we put on ourselves. I hope my posts will touch someone out there and help her days be sweeter!

Wednesday, June 16, 2010


I found myself tonight, as I do a few times each month, searching the internet for answers to emotionally charged questions and looking for other families who have faced a similar situation as I have... losing a child. Tonight I found a few families who lost their little angels to trisomy 13 or 18 and HEP. I have a couple friends who have first hand experience with HEP (alobar holoprosencephaly). While I still have to wait for my answers as to why my son's body couldn't sustain life, I find peace knowing that for some mothers out there, there are answers.

It was about 3 years ago that I found out that I was pregnant for the 9th time. I was excited and worried at the same time. I had a hard history of several miscarriages for known and unknown reasons. My husband and I waited for several weeks before we told anyone. I was starting to show at 8 weeks and thought it was pretty strange. I figured I could tell people now, since asking was starting to ensue. At 10 weeks I awoke in the middle of the night with that awful sinking feeling that something was wrong. I felt blood. I got up, discovered I was right, and told my hubby I had to go to the hospital right away. He needed to stay home with the kids and stay home from work if I wasn't back in time for him to leave. I then drove myself to the hospital and checked in to the ER. I waited for 4 hours before making my way painfully to the front desk and ask why it was taking so long. The waiting room was fairly empty, and there were others that had been there longer than I had. While pleading with the triage nurse to be seen soon, I felt another gush, and now there was a fresh puddle on the floor. This got me back immediately to see the doctor. He figured it was just another miscarriage and ordered an ultrasound to see what was left, and if a D&C was needed. To our surprise, there was no miscarriage, but twins! I was assured the bleeding was under the babies and not hurting them. I took my sonogram picture proudly home and showed it to my husband just in time for him to wake up and go to work. Again, I was excited and worried. The bleeding continued for 5 weeks. I saw a perinatologist as my OB at a specialty clinic. All seemed to be going well. At 16 weeks I was asked if I had ever been tested for being a carrier for the CF mutation. I had no idea what this was, but if insurance was going to cover it, why not? I got a call the next week at work with the results. During that week I did a little research on what it was... not good. I had old info stating that children born with CF (cystic fibrosis) were lucky to make it to age 10. The super lucky ones got to be teenagers. So when I received that call telling me I was in fact a carrier- I lost it. Being pregnant anyway makes a woman emotional, but this news did me in. I was crying to my boss that my kids were going to die and I couldn't do anything about it. Now it was time for the spouse to get tested too.

We figured he was coming to the 20 week appointment anyway to find out the genders, so we scheduled his test then. It was on a Monday. That previous Friday had been a VERY stressful and over eventful day at work (pre-school and daycare) where myself and the other assistant director had been running the center for the week as the director and her family were away on vacation. Throughout the day, I knew there was something wrong, but I figured it was just from the awful day. On Saturday, the Holy Ghost kept telling me, "Pay attention to who is moving," all day long. So I did. They were both active and playing as usual. That night I went to a General Relief Society Meeting at church. I saw an old friend who was also pregnant. I told her I was having twins. Then the Holy Ghost whispered, "No, you're not." I was so confused. "Yes, I am," I argued back. "No, you'll see," was my answer back.

Monday came and I went to my appointment with 2 kids in tow and got a call from the hubby that traffic was heavy and he'd be late. The kids and I agreed that we'd start the ultrasound with out him, and do the genders twice (and act surprised the second time). First one... a boy! "Where's my sister?" my daughter cried. "Don't worry, there's another one," I told her. They were fraternal twins. "It's another boy!" "But I want my sister!" she protested. It took some convincing to get her to accept 2 more brothers. The technician went on and had a puzzled look on her face. She moved the scope to several different positions, then dropped her head and shoulders, took a breath and said, "I can't find a heart beat." She showed me his still body and pointed out that his bladder was enlarged, meaning it had not emptied. She said that this and his growth size compared to his brother meant that he had died sometime in the last week. I said, "No, he died yesterday. He was alive on Saturday." Just then, my husband called asking how it was going and that he was almost there. I had to keep a level head and not let on that something terrible had happened. Over the phone was no way to break this news. I told him he had to get there ASAP, I needed him. My kids were crying. I was in shock. There was silence in the room as the technician finished her exam. My husband walked in with papers he was filling out to take his CF test. The tech asked if we needed a moment. He looked confused. I told her, no and that I needed her there. I told him one had died. She showed him the difference between the 2 bodies. There were many tears and questions. The doctor came in and spoke with us about what was going to happen. I had to continue carrying so the other baby could have a better chance at survival, but I was now at risk at going into labor at anytime. I was to be heavily monitored. We spoke to the chaplain that serves that office and hospital. She gave us a gift to use for remembering our lost baby, and information for bereaved parents. The nurse came in and gave me a hug. I was eerily silent. I had too much to process. The nurse put it perfectly as "bitter-sweet." The appointment ended, and now we had to go home. The CF test didn't happen.

I called work and told them I couldn't work for the rest of the week and why. They were not to tell anyone outside of management what was happening. I couldn't deal with that yet. We told our family and friends at church. The next day I had sisters from church at my door with cards, flowers, lots of hugs, and meals for my family. The first sister to arrive was the one I needed the most. She had an angel daughter, and knew what I needed.

The next 3 months passed very slowly, day by da
y. No one at work knew what had happened until my last week before leaving. My daughter spilled the beans. People acted very strange around me. Some completely avoided me or wouldn't make eye contact. This is why I didn't want them to know. I had a cesarean at 38 weeks. One live baby, and one not. We named him Elliott, "Jehovah is my God." There was a peaceful silence when he was born. I heard a nurse whisper, "wow." The Lord told us all, "It is sufficient." Our Elliott had fulfilled his calling in life without taking a breath. He was mummified, which I had prayed for daily. The day we had the original news, the doctor said there was a chance he could be reabsorbed into my body. I was very disturbed by this thought. I prayed fervently to have his body, to have proof that he existed. My prayer was answered. Because of the twin situation though, he had a condition called fetus papyraceus. This is where the weight of the twin flattens the body of the deceased. He was 18cm long and 1/4" thick. Pathology couldn't find anything wrong with him. He had appeared to be healthy. Now he rests on the top of a hill (God's natural temples) overlooking the countryside with a beautiful sunset every night.

The day after they were born, my new little boy was having his own problems. There were troubling signs that something was wrong. After many hours of talking with the nurses and nurse practitioner and a few tummy xrays, my son was hurried off to the NICU. He had meconium ileus, an indicator of cystic fibrosis.

He lived in the hospital for his first 12 weeks (3 months) of life- undergoing 4 surgeries, 3 blood transfusions, countless procedures, and numerous IV lines that were constantly blowing or infiltrating. He ended up having one sewn into his heart. He wasn't allowed to eat. For a while we couldn't even touch him because the stimulation was too much for his system to handle. My heart broke when he didn't make a sound even though he was screaming. He had an intubator to help his body not have to think about breathing. He had wonderful nurses and doctors who loved him and took the greatest care of him. We celebrated 3 holidays there during his stay. I stopped counting the babies that got discharged before we did. I saw so many families come and go without knowing what really goes on day after day in the NICU. I'm grateful they don't have to know.

I made som
e friends there, and helped keep a smile on some faces when tears wanted to overcome. There were two other families that had been there just as long as we had, and we all ended up bunking by each other in the end. We'd joke about who was going to bust out of there next. Our little guy ended up winning, followed by a gorgeous little girl, and lastly by a spunky little boy on Mother's Day. I thought that was a pretty cool gift to give his mom.

Now, here it is almost 2 1/2 years later. The doctor visits have gone down to just maintenance visits now. The feeding tube left 2 weeks before this last Easter. Our litt
le bundle of a CF miracle is doing pretty good. He is definitely all boy. His big brother and big sister love him very dearly, and understand that he needs extra care. They take it very well, and understand that if they want their brother to stick around as long as possible, he has to have his medicine and therapies. I have never seen any resentment from either one of them. They are awesome!

So for this bittersweet life I am grateful. I know that I will get to hold ALL my children in my arms someday. They are mine, and I am their mother. All will be made right. Until then, I need to make sure I am fighting the good fight and keeping my cup full to take on and continue on for my family's sake.


  1. Even though I already knew the story, and I was there when they were born, this still brought on a fresh set of tears...

    I have been feeling sorry for myself today, feeling lonely and worthless... thank you for sharing and helping me to get my feet back on the ground. Love you.

  2. I don't know how I did it, but I'm glad you're feeling better. I had fresh tears writing it as well. The hurt never goes just gets easier to deal with.