Molly's Story
On August 9, 2003, I gave birth to a beautiful baby girl, Molly Kay O'Brien. She was our second daughter. Molly was absolutely perfect in every way. I remember all of us lying in bed one night, my husband and I talking about how perfect our lives were with our two little girls. We felt so blessed to have been given such gifts from God. Delaney, our 3 year old, sang "Twinkle, Twinkle Little Star" to Molly and had been singing it since she was in my belly. That night flashes back into my head quite often. Those words often haunt me.
Within 3 weeks of bringing Molly home, I began to feel as if something was not quite right. She had become very fussy, arched her back often, and had difficulty breastfeeding. I, of course, thought I was doing something wrong since I hadn't breast fed our first baby. My sister-in-law had provided me with support and given me the name of a lactation consultant. In the meantime, Molly became more and more irritable. One day after nursing, she vomited more than I would have ever imagined a baby could. I immediately called her pediatrician, who was out of town at the time. I even called my OB doctor to talk to the nurse and see if I was doing something wrong with breastfeeding. She told me that breast fed babies do not vomit unless something is wrong, and suggested I take her to the on-call doctor that day. My husband met us at the doctor's office. The doctor asked about what I had been eating and said that it was probably just the meatloaf I had eaten the night before upsetting her stomach. We went home thinking things would get better.
The following week, we went to the lactation consultant. After holding Molly, she noticed she had rather large soft spots in the back of her head. She also measured the circumference of her head and alerted us that it seemed to be out of the ordinary. Brad and I had noticed Molly's looks changing, but newborn babies change from day to day. The lactation consultant seemed very concerned and even took Molly out to the nurses' desk for observation. When she came back in the room, she strongly suggested to us that we get Molly to our pediatrician. She tried not to alarm us, but we could sense the urgency in her voice.
We immediately went to our pediatrician's office and told them we needed to see the doctor. I don't think any parent could have prepared themselves for what came next. The doctor saw us right away. We told him the events of the morning and how the lactation consultant had stressed that we needed to get Molly to her doctor right away. He began to examine Molly. He told us that something was very wrong. He left the room for a minute. While he was gone, his nurse came in and asked us if we had someone to watch our older daughter. The doctor came right back with the name and number of a neurosurgeon at the Children's hospital in Peoria. He told us that Molly had hydrocephalus and we needed to find out what was causing it. He told us to stop at home, pack a bag, and head straight to the hospital. The doctors would be waiting for us. Those are words I hope no other parent will ever have to hear. I remember my heart was beating so fast, I felt like I was in a bad dream and just wanted to wake up. I just held my baby close and cried. I remember Brad telling me to be strong, that everything will be ok, it just has to.
The next hours, minutes, days, months, seem to blur together. We went home and furiously packed a bag, thinking we might have to stay at the hospital overnight. Molly seemed to be getting more uncomfortable by the minute. It was the longest 35 minute drive we have ever made. Brad and I were numb and so frightened about Molly's prognosis.
Once at the hospital, Molly was admitted and immediately hooked up to machines. The next days consisted of tests, waiting, tests, waiting, CT scans, waiting, and finally an MRI. I remember it was evening when the doctor came in to talk to us. We were surrounded by our family and friends but physically and emotionally drained from the waiting. The doctor told us that Molly had a very large tumor in her head that was causing the hydrocephalus. The tumor would have to be removed, but the prognosis for a baby only 3 weeks old surviving brain tumor surgery was very poor. The next day, the neurosurgeon told us he had never seen a brain tumor in a baby this young. He tried to give us an idea of what to expect, but again he told us that the survival rate for Molly didn't look good.
At first, we were under the impression that they would attempt to remove the tumor the next day which was a Friday September 5, 2003. As it turned out, Friday's surgery would be to insert shunts into her brain which would hopefully alleviate some of the swelling in Molly's little head. They also told us that they would put a broviac catheter (central line) in her chest for easier access for medicine, transfusions, possible chemotherapy, etc. The neurosurgeon told us that they would do the surgery to remove the tumor on Monday which would be September 8, 2003.
Friday's surgery went well. They were able to insert the shunts and the catheter. The surgeon told us that Molly did very well but he wasn't sure how well the shunts would work because there was so much tumor that some of it broke off and possibly got into the shunt. We were able to finally see Molly in the Pediatric Intensive Care Unit that night. To be honest, the wonderful feeling of seeing her alive after that surgery overtook what she looked like. We spent that night in and out of the ICU. We slept very little in chairs in the waiting room.
The next day was a Saturday September 6, 2003. Molly was taken to a room on the Pediatric Intermediate Care Unit about mid morning. We spent the rest of the weekend holding her and visiting with many friends and family that came by to visit and offer support. We had a very real feeling that Molly might not make it through Monday's surgery. We spent every moment with her in her room throughout the days and nights.
Monday morning came and we prepared for surgery. Again, we were surrounded by our friends and family praying, laughing, and crying. I believe Molly was taken to surgery between 11 and 12. It was the hardest thing we had ever done at that point to say goodbye to her in pre-op. How do you prepare yourself for something like that, knowing the possible outcome. We tried to remain positive. We were hoping and praying for a long successful surgery. We knew a quick surgery meant there was nothing they could do for her. Much to our surprise and fear, we saw the surgeon walking towards us at around 2:20. By the time he got up to us, he had a smile on his face and said, "I think we might have a chance". This was the best news that we could have hoped for at this point. He told us that the tumor was easily distinguishable from the brain and very easy to remove. He removed a softball sized tumor from her little head and again said he had never seen anything so large in a baby this small.
We got to see Molly soon after that, again in the Pediatric Intensive Care Unit. She had an incision across the top of her head from ear to ear and she was on a respirator. Her vitals were very good though, and again, he told us that she did wonderful in surgery. Brad and I sat, hour upon hour, in her ICU room. That is where we met one of the most loving people I have ever known. Her name is Cookie Bannon, and she visits children in the hospital and shares her gift of music with them. She came in the room and asked if she could sing to Molly. I told her I would love that and asked if she could sing Molly's favorite song, "Twinkle, Twinkle Little Star" to her. Cookie began singing, and bless her little heart, Molly opened her eyes. It was as if she was telling us she loved the music. At that moment in time, I thought for sure she was going to be OK.
I remember holding her for the first time after that surgery and thanking God for letting me keep my baby. I was willing to accept any disabilities she might face in the future, as long as I could keep her.
The days that followed were filled with ups and downs. Soon after surgery, the MRI's and CAT scans indicated that the tumor was much deeper into her brain than the Dr. originally thought. It appeared that they had actually only been able to remove about 60% of the tumor and what was left was inoperable. We waited patiently for pathology reports to come back. When they finally did, we were told that Molly's tumor was an immature teratoma. The immature part was the worst because that meant that the tumor would keep growing quickly. Our one hope at this point was that Molly could grow and age quicker than the tumor. That way, she would be old enough for radiation and/or chemotherapy. Molly's doctor told us that we could only wait and see what the tumor decided to do. He scheduled another CT in a month to check the growth of the tumor.
We were able to take Molly home on two different occasions. The longest we were home with her was four days however, with support from Home Health, volunteer nurses, family and friends. We had to make daily trips to Peoria to drain the fluid that was collecting around the shunts. Molly was being given anti-seizure medicine, pain medication, anti-inflammatory medicine, and antibiotics. We remained hopeful that the tumor was contained and Molly was progressing as expected. As it turned out, the tumor grew much more quickly than Molly did.
The first trip back to the hospital was awful. Molly began having small seizures in the night. We took her to our local hospital and the doctors immediately wanted to life-flight her to the Children's Hospital in Peoria. However, the weather that early morning was foggy so the helicopter couldn't make the trip. Instead, she was transported by ambulance and admitted again to intensive care. The doctors did another CT scan to see if the tumor had changed. The space that had been left after the tumor removal surgery had been filled. The doctors confirmed that the tumor had begun to grow uncontrollably. The doctor told us to take Molly home and give her the love of a lifetime.
angel Molly
Our journey turned from praying for a miracle for Molly, to praying the doctors could keep her pain under control. The shunts could not keep up with the amount of fluid building up in her little head. The doctors decided to externalize her shunts to allow better drainage. We talked the doctors into letting us go home with Hospice care. They taught us what we needed to know to provide Molly with medications, etc.
It is strange how I remember the last few days like yesterday. The days from September 2003 to a few days before Molly died were all blurred together, but I vividly remember two nights before we were to take Molly home from the hospital. Before this time, we had been praying for a miracle, believing that God would not take our daughter away. We were willing and able to take care of any handicaps Molly might face. But something happened that night. Brad and I said our rosary together, and at the end instead of asking for Molly to be healed and free from pain, we asked God to help us accept His Will. Somehow we knew it was time to accept that Molly would not be with us much longer.
The very next night, we had started packing up to take Molly home to enjoy the time we had left with her. (The doctors had said she might have six months left to live.) Brad had taken something out to the car and Molly began gasping for air. It seemed like an eternity until he returned to the room. He didn't leave our side after that. We both knew we were not going to make it home. All along we had said we were doing what was best for Molly. I think this was Molly's way of telling us she was doing what was best for us. Her breathing got more and more labored as the night went on. Later that night, we took Molly and went to the Chapel. The nurses gave us a portable morphine pump so we could take her with us. We cried and prayed, then cried and prayed some more. We slept holding Molly all that night. The next morning we called our family and told them we would not be coming home, instead that they needed to come right away to the hospital.
Molly spent her last day on earth surrounded by her family. We held her, kissed her, prayed for peace for her, cried, and shared stories about her journey. Her three year old sister even shared a popsicle with her. Brad and I held her in our arms as she took her last breath surrounded by her family.
As the angels came to get Molly, they left behind gold glitter on Delaney's cheek. We took that as a sign from Molly. To this day, gold glitter will pop up on our cheeks from time to time. We look at it as a sign that Molly is watching over us and reminding us she is ok. Friends of ours also registered a star in Molly's name, so now when we look into that deep dark night sky we know that our Molly has her very own star. Although she was only with us for a short time, Molly taught us so much about unconditional love, patience, and the value of every minute together.
I know I will never be the same person I was before Molly died, but it is my hope that I will be a better person because I was allowed to be her mother. My husband and I have become even closer. He is my best friend and my strength! I am thankful I have my Faith to turn to, as I can't imagine going through life without a sense of something greater.
My husband and I have created a scholarship in memory of our daughter. The scholarship will be given to 8th grade students (one chosen every couple years for now) as an incentive to graduate from high school. Upon graduation from our high school, the scholarship will provide the student with 2 years tuition, fees and books at our community college. Education has always been important to both of us, and we feel blessed in helping students who might not have a chance to attend college to further their education.
This last October (2004) marked one year since Molly died. A friend and I organized "A Walk to Remember" in our town. The Walk was to honor any children who have died. The Walk was held on the 3rd Wednesday in October. Over 150 people attended. We had a small program, wore t-shirts with each of the children's names we were remembering, had a balloon release as we read the children's names and walked one mile in their honor. Although the morning was filled with emotions... excitement in seeing such a large group of people, nervousness about talking in front of the crowd, worry about the dreary, cold and windy weather; sadness filled our hearts knowing we were all there for the same reason. As we released the balloons that day, the sun came out. Yet another sign from our angels that everything will be ok.
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