Book Signing

Yesterday was amazing!  We had a wonderful church service led by the pastor's wife.  We also had some special guests who joined us to celebrate the 70 year anniversary of their Magnus chapter.  Afterward, our pastor had a little surprise for our guests.  He purchased 25 copies of my book, "Journey of Courage", and we had ourselves a book signing.  We also received  $80 in additional donations toward Robby's service dog.  It was very exciting!

On a separate note, I have been thinking long and hard for some time now and have come to a decision.  I gave my notice at work today so that I will have more time to devote to Robby and to my writing.  Currently I am beginning work on a children's book about Robby and also on a short fictional book.  I am looking forward to this new chapter in my life.

Teaser

I have written a book about Robby's struggles with hydrocephalus and cerebral palsy as part of my fundraiser to get him a service dog.  Would you like to help us out?  I have provided a sneak peak of the book.  Be sure to read all the way to the bottom as I have included links to Amazon to purchase the book, and also a link to our GoFundMe page. 

Chapter 2 The NICU
Before Chris and Michael made it back the next morning a large group of doctors came into my room. They had done some imaging overnight and wanted to speak to me about the results. The doctor who was in charge informed me that most of the other people in the group were medical students and asked my permission for them to observe. Usually when I am asked that question I agree to it. Learning is very important and I feel that new doctors need to see and hear as much as possible to help them become better in their fields. But today was different. I was about to hear a long-awaited answer to some very terrifying questions and I didn’t want an audience.
He got right to the point. The CT scan showed a large mass the size of an adult fist at the base of Robby’s brain. The mass was blocking the aqueduct where the spinal fluid is supposed to drain and was the cause of the hydrocephalus. They suspected it was cancer. My heart sank into my toes when he said, “Cancer in babies tends to be very aggressive and their life expectancy is less than 6 months.”
As the tears streamed down my face he went on to explain that they would do further testing to determine if the tumor was operable. They wanted to do an MRI to get a better look at it before making a decision. At the very least, he would need surgery to place a shunt which is a tube and valve system that drains the spinal fluid to the abdomen where it belongs. A small catheter would be inserted into one of the ventricles of his brain. The catheter would be connected to a valve and a long tube would run from the valve to his abdomen. The tube would be long enough to be coiled up at the base so that it would “grow” with him and not need replacement unless it stopped working. He would need to remain in the NICU for at least two weeks. I gave my permission for the test and he left.
I laid in the bed crying and staring at the ceiling, longing to hold my baby. A nurse came in and pressed on my abdomen several times to prevent post-surgery blood clots. She informed me that I would be walking today. I laughed weakly and said, “I can’t roll over without extreme pain. How am I going to walk?”
She told me that the pain would be worse if I didn’t try to get up and move around. She also said that getting up and moving around would help prevent dangerous blood clots. So, with a concerted effort and a lot of help from the nurse I got into a seated position with my legs dangling over the edge of the bed. She allowed me to rest for a few minutes and then helped me off the bed and I set off for a walk in the hallways. I was surprised to find that it actually felt good to be on my feet and I walked the entire ward twice.
I had already finished my walk and had breakfast by the time Chris and Michael arrived. They gave me a singing balloon that my parents had sent along with a note saying they would arrive in a few days. We settled Michael in with a portable DVD player and a set of headphones so that he wouldn’t be able to hear as I relayed to Chris what the doctor had told me.
“All I want to do right now is hold him,” I said.
Without further prompting, Chris set off to find a nurse and see about taking me next door to the NICU. She brought a wheelchair to the room and told me to call the nursing station when I was ready to return. Since Michael was not allowed in the NICU, Chris and I took turns sitting with him in the waiting room while the other was with Robby. I was able to have my meals delivered to me there so I stayed long after Chris had taken Michael home.
One evening after Chris and Michael had already left an alarm sounded and a voice came over the PA system advising everyone to stay away from the windows. A tornado warning was in effect. I paged my nurse and asked to be taken next door to see Robby. I couldn’t stand the idea of being away from him if something were to happen. She informed me that no one would be available to wheel me over there for a few more hours. So I asked her to bring me a wheelchair and told her I could wheel myself over. Wow was that ever a hard trip. I had never actually tried to push myself in a wheelchair before, and the distance combined with the small hills that were all through the tunnel really wore me out. I had to stop and rest several times. After about an hour I finally made it to the NICU. The nurses there told me that no one would be able to take me back to my room until after 9 p.m. I told her that was fine with me. I had worked hard to make it to the NICU and was in no hurry to leave.
I was discharged three days after my cesarean. The hospital staff had made arrangements for us to stay across the street at the Ronald McDonald House so we wouldn’t have to make the long drive every day from Terre Haute. Let me tell you, I still get tears in my eyes when I talk about that place. It. Was. Amazing.
Chris went to the RMH to request a breast pump for my room. When he arrived, the manager informed him that he had just signed out his last one. There was a pumping room located downstairs. Until a pump became available for my room I would have to go down there every couple of hours to do my business. I was physically exhausted from my surgery and emotionally drained. This did NOT sound like fun. But it was the best they could do at the moment so I would make due.
The room was a decent size with a full bed and a private bathroom. We spent the first evening reading through the book on the nightstand. It was full of the stories of every family that had stayed in the room. One in particular tugged at my heartstrings. The family had been through so much with their child and had noted that the rest of their story was in other journals throughout the RMH in the rooms they had stayed in during previous hospitalizations. We added some of our story to the book, with the rest to be written on our last day in the house. Chris left around ten o’clock to take Michael home and promised to return in the morning. He couldn’t stay with me until my parents arrived because although children were allowed at the RMH during the day, only the parents were allowed to stay the night.
Around midnight I heard a knock on my door. My blood ran cold as possible reasons for someone coming to my room this time of night ran through my head. I was sure that something had happened to Robby. When I opened the door I saw the manager standing there…with a breast pump. One of the other moms had overheard his earlier conversation with Chris and asked him to bring it to me. She said that her room was very close to the pumping room and she would rather I have it. Once again I found myself crying. I was overwhelmed by this stranger’s kindness.
The next morning I wandered downstairs to make some breakfast. There were several small kitchens. Each one had four rooms assigned to it. They were equipped with a refrigerator, dishwasher, stove, sink, and a fully stocked pantry. Everything we needed was there and it was all free. The next time you eat at McDonald’s I encourage you to throw your change in the box for the Ronald McDonald House. Those places are a real blessing to families going through traumatic health issues with their children. In addition to the kitchens there were play areas for the siblings of the children in the hospital, a T.V. room, a playground outside, and every night they served a hot meal so that exhausted families wouldn’t have to worry about cooking.
I headed straight to the NICU after breakfast. I spent the morning snuggling with Robby and waiting for Chris to come back. Later that afternoon the neurosurgeon stopped by to speak with us. He had the results of Robby’s MRI. Praise the Lord it wasn’t cancer! He said the mass was a blood clot and described it as a bruise that never healed. At this point I asked if it could have been caused by my car accident. I was shocked when he said no. He said there was nothing we could have done to prevent it. To this day I feel like he told me that so I wouldn’t feel guilty and like it was somehow my fault. How else would he get a bruise in utero? Still, I was so happy that my baby didn’t have cancer that I didn’t question it.
He also had something called a teratoma on his brain. It was a small calcified spot. His doctor said these tend to show up in cases where the pregnancy starts as twins and one twin absorbs the other. I guess my friend had been right. He said they can turn into all kinds of things like hair or teeth. I guess you could say that Robby carries his twin with him wherever he goes.
The doctor stayed and spoke with us for quite a while. He explained the shunt placement surgery to us and told us how the shunt worked. He would most likely have one for the rest of his life. We were told that occasionally it may stop working properly and that if it did he would require another surgery to revise it. There is no cure for hydrocephalus. The only treatment is brain surgery and he would definitely have to go through it more than once because shunts simply don’t last forever. The doctor said they would not be trying to remove the blood clot because they were concerned that doing so could cause a hemorrhage in his brain. They intended to monitor it closely with periodic CT scans. We would have to wait and see what the extent of the damage to the brain was and what long-term effects he may suffer.
The surgery was performed when Robby was a week old. We were given a pager and told that the procedure would take about an hour. They would page us when he was settled in a recovery room. Nothing could have prepared me to see him afterward. One side of his small head was covered with a large bandage and he had tubes everywhere. The doctor assured us that the surgery had gone very well and that we could finally relax for the time being.
My parents had arrived about two days earlier. They brought a huge bag full of clothes, toys, and blankets. None of it was allowed to be kept in the NICU, but they had wanted me to at least get a look at the gifts before taking them to the house. They took turns holding Robby and when my dad spoke to him he opened his eyes and I swear he smiled. I know, I know, at that age it is supposedly just gas…but it sure looked like a smile to me. I like to think it was our first look at the great sense of humor he would develop. The reason I say that is because my dad didn’t just say some generic hello to him. He spoke in a very deep voice and told him he had a big chunk of stove wood for him. I still don’t know where he came up with that goofy comment, but Robby mentions stove wood every time he talks about his grandpa. After they had both had a chance to hold Robby, my parents took Michael and stayed with him at our house so that Chris and I could both stay with the baby.


The next couple of weeks were a blur. I spent every waking hour in the NICU. Occasionally the nurses would insist that I go get some rest and remind me that I wasn’t any good to Robby if I wasn’t taking care of myself. At one point, I remember returning from pumping my milk to find several nurses huddled around his bed. I rushed over to find out what was wrong and they smiled at me.
“Nothing is wrong,” one of them said. “We aren’t used to getting full size babies in here; we’re just admiring.” Most of the babies in the NICU weighed three pounds or less. Robby weighed nine pounds, eight ounces.
The entire experience was extremely emotional and overwhelming. Chris and I met a couple of ladies in the elevator one day and traded stories. They asked if they could pray with us. So they got off on our floor even though their loved one was upstairs in the PICU and we prayed together right there in the hallway. A few days later we went to a nearby car dealership to purchase a minivan. I can’t stand vans. They remind me of rocket ships. However, we had four kids now and they sure as heck weren’t going to fit in our Jetta. We shared our story with the salesman and he prayed with us too.
Robby spent a total of three weeks in the NICU. Finally the day came when we got to take him home. Right away Michael wanted to hold his brother. He was so proud! Our family was together at home at last. We still had a long road ahead with many challenges, but right then we were simply happy.

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Donations can also be made via PayPal using the email address becky.wetzler@live.com