It has been 26 days since we found out that my wife and I lost our son Johnathan Paul. 26 days of sadness, 26 days of thinking about what could we have done differently. 26 days of "that look" that people give you when they have nothing to say to you, 26 days of an overwhelming feeling that nothing you do will fix the way I feel.
There are a 2 things that I have known for sure in my life, and in one way or another I find comfort in these known facts. First, I knew that I wanted to marry my wife, Amanda, 30 seconds after meeting her, and second I knew I wanted to have kids with my wife.
It took 4 years to work up the nerve and to get over some kind of fear of commitment that I may have had to ask Amanda to marry me. But while we were on vacation one day in January of 2010 in Mexico, I got down on one knee and asked her to marry me. I knew what the answer was before I had to ask, but I still had that nervous butterfly feeling in my stomach. Once she said the word, "yes" I was on top of the world.
Since 2010 I have been on top of the world. Nothing can tear me down as long as my wife was by my side. Nothing, until Friday December 12th, 2014 at 4:12 pm. I was finishing up my work for the week, talking to my co-works, looking forward to Saturday, as we were announcing to our closes friends and family that we were going to have a little girl. My wife calls me and said that she just got off the phone with our doctor. There are concerns with the way that our child is developing and that we need to go see a Fetal Concerns Doctor at Froedtert. I just fell, and I fell hard.
How was Amanda and I supposed to pretend to be happy that we were having a little girl when something is going wrong with our little princess? How do we pull this off? But somehow we did pull it off, with only one person asking me whats wrong, and it was my own mom. I told her that I would talk with her later, but for now lets just be happy that you are going to have a granddaughter.
Monday morning was literally hell on earth. I thought I fell hard on Friday, I was being kicked and punched and falling again all day Monday. First we had to sit down with a genetics specialist to explain what Downs Syndrome, Trisomy 13 and Trisomy 18 was. She also wanted to go through all our family history, or at least what we knew of our family history. And told us different outcomes for each of the syndromes.
When my wife and I had a minute alone, we said we would love to have a baby with Down's, there is nothing wrong with them, and why are we here at Fetal Concerns over Down Syndrome.
After talking to the Genetics Specialist, we were lead into another room to have another ultra sound. (By doing an Ultra Sound, it was probably the best thing out of this whole day, seeing my daughter again.) The tech confirmed a second time that we were having a daughter, but she confirmed that the umbilical cord was not working properly, and the position that she was in, they could not see every position of the heart and the brain they needed to see.
Doctor Cruz, and the RN Cheryl both came in and gave us devastating news. They both told us that we were going to loose our baby, and probably loose her before or during Christmas. (Which was just over a week away.) Not only did I just have a huge fall, but now I am being kicked down even further.
Doctor Cruz insisted that we did an Amnio Synthesis. It is where they take a really long small needle and insert it into the amnio sac to take cells and DNA from inside the sac to preform different tests. Amanda and I really didn't want to do it. We have read the statistics and we knew what would have happened if the needle moved just a little inside, and we couldn't do it to our daughter. However, we were told that not doing it would out weigh and be more dangerous to not do it than it was to do it. So we agreed to do it, and we agreed for them to do multiple tests IE, Downs, Trisome 13 and 18.
Later that night Amanda took a call for our regular OB/GYN doctor. Our doctor was extremely apologetic, and told us that we need to look deep inside ourselves, because this will be shaken down to our core beliefs in the next few days and possibly weeks. When the doctor hung up the phone, I tried to be as positive as I could, for Amanda's sake, but I knew that we were in trouble.
We called all of our parents, and discuss what was happening with our daughter. My Mom and Step Dad, Terry, came the next day. They bought us groceries to last us a few days, and I had my Mom call my Dad, because I couldn't do it myself. When they left to head back home, they are from Madison, and its about a 2 hour drive from our house to theirs. Amanda and I just cried. How could something like this happen to us, this happens to other people that you read about on the internet, this might even happen to someone somewhat close to you (friend of a friend) but not our friends, not our families, not us. We made it past the first 12 weeks of pregnancy, that is when this happens, not after 20 weeks.
Wednesday of that week, we went back to work. While at work, I was taking phone calls from all our parents, the doctors and from Amanda. I did not talk with anyone I didn't have to. I have no idea how I made it through that first day back.
I received a call from our RN Cheryl. She wanted to let us know that some of the tests came back, and that they were negative. Which was great, we know that our daughter did not have Downs, and Trisomy 13 and 18. She also told me that I had a little boy on the way and not a little girl. My little princess turned into my little prince, and I just broke down crying. I had no idea what to think, I was so confused, and for the first time I was a little angry, that this was happening to us.
The following Monday we went back to the hospital, this time we were armed with all six of our parents. We brought them to help us through the next few hours and for them to hear what the doctors were saying, so we don't have to relive the pain of telling them. To be completely honest, I have no idea what happened during those few hours. I know that we talked with at least 3 different doctors, but I have no idea what they said. I remember 2 balloons floating outside, and how I would have traded everything just to be one of those two balloons so I can float away and not know what this pain I was feeling. At the end of this meeting, we were told that we needed to come in every week to see the progression of growth. Thank God, we had someone take notes, so I can review later.
Over the next 6 weeks, Amanda and I had our routine, we would get up Monday morning, and head into Fetal Concerns to look at our son. It was the most joyous part of my week. I felt more connected with him during that 5 minutes than I have ever felt with anyone. I defined myself during that time, and I didn't want that time to ever end. I know that Amanda and the Tech, Kate, was always in the room, but during those short moments with my son, I knew what my purpose in life was. I knew why I was here. I was here to be a father to Johnathan Paul.
The morning of February 2nd, 2015, started a little different than all the other mornings. Instead of having an appointment right at 8 am, we had an appointment at 11:30. We also had a snow storm the day before, with 11 inches of snow. I had to get up at 5 to snow blow us out of our house, and I needed to be at work really early, so I could leave early to make our appointment. I rush home, pick up Amanda and head to the hospital like every other Monday.
We take our normal route to the hospital, park in the normal parking spot, and I check us in for the appointment while Amanda runs to the restroom. I was told that they were running a few minutes behind, so we just needed to wait for the Kate the Tech. Amanda and I were laughing and talking about the future, (during this time our future was not months, weeks or even days, it was what we were doing next). Kate called us into the room, and asked how we were feeling. Both said good, and settled into the room.
As Amanda laid on the table, Kate put the gel on Amanda stomach, I knew with every living fiber inside of me, my life has changed forever, even before the doppler was picked up by Kate. The doppler moving around Amanda, and Kate confirmed that there was no heartbeat. Johnathan Paul was dead, the reason why I was alive was no longer alive. Kate left the room and Amanda and I just cried. Cried, not only because our son has passed but our future no longer was the next 10 minutes, but our future no longer had our son apart of it. Cried because I know Amanda will now have to go through the physical part of the pain. Cried because the love of both of our lives is gone, cried because our son was no longer here. Cried because I was no longer a father.
The Doctor and the Nurse came into our room, and confirmed that he was no longer here, and told us about the next steps, birth.
It has been 26 days since Johnathan was here, 26 days since the worst day of my life, 26 days since my heart broke. 26 days.
