Teddy's Story

Chapter 1- Smashburger No More!

There are very few people that know this part of the story, the week leading up to Teddy’s birth. Like my last post, we haven’t talked about this part because it was too hard and we had the miracle of Teddy to focus on. But I truly believe that the week before his birth was one of the hardest for us as his parents. Being told your child likely will not survive is something no parent should have to hear. From the moment we walked into that hospital room before he was even born and until the day he was weaned off the breathing tube, we heard it on repeat. We would hear it several more times in the coming months as well. There truly is no way to process that type of information. You are trying to figure out how to plan a funeral for this tiny human that has not even entered the world yet. You cannot process how you can go back to your life and continue on doing the same things as if there was never going to be a tiny baby in your life. You think about how on earth you are going to walk into the nursery, you were working so hard on setting up, with empty arms. You try so hard to wipe your tears and put a smile on and tell your family you are okay, that it will be okay, so their pain is not as heavy and strong as yours. All you want is for everyone to stop talking, to stop trying to explain, to stop poking and scanning, to stop comforting, to stop saying they will take care of this or that, and to stop saying you are in their prayers or that god has a plan. You just want to sit in a dark room to cry and not have to think about the world around you. Unfortunately, life is not that generous.

After checking into the hospital, things went from bad to worse. Not only was my blood pressure elevated, apparently, I was having contractions that I couldn’t feel. Up until this point, the only things we knew for sure were that he had asymmetric IUGR (Intrauterine growth restriction) and that one of the arteries in his heart was not growing properly. While they were concerned my blood pressure was still elevated and the polyhydramnios, the concerns with the ultrasound imagines continued to worry the doctors and more and more focus was put on the likelihood he had a genetic condition like Trisomy-13, which unlike Trisomy-21 (Downs Syndrome) has a very low probability of survival (at least that is what they told us). They couldn’t find a stomach bubble or clear shots of his kidneys. His lungs were underdeveloped. His head was large, but the rest of him disproportionately small. He wasn’t moving well. His heart rate was a little high and the structure was not quite right. There were other things as well. Now, if we had known then what we now know about what other possibilities those ultrasound images meant or even what we now know about Trisomy-13, we would have pushed back immediately. We would have asked to be transferred to a more experienced hospital somewhere. We couldn’t understand how it could be Trisomy-13, because the blood test I had done was negative. But at the time, we had never heard of most of these words. All we knew was that we were being told our baby wouldn’t survive or if he did he likely wouldn’t survive his first year. I don’t blame the doctors honestly. All of his conditions are very rare, especially the combination of all of them, so they were going solely on the most likely scenario and preparing us for what might happen.

I was trapped in a hospital room on mostly bed rest, because of the contractions and my blood pressure, and constantly having to talk to doctors about how our baby wouldn’t survive. Our parents came into town to support us and look after our house and dogs, which was wonderful, but they were also grieving along with us, which added that much more stress and sadness. One of my best friends was in town for that work thing I mentioned in the last post, and I can remember him standing in the hospital room, with a broken heart not knowing what to say. I just looked at him with tears in my eyes, not knowing what to say other than I will be okay, because I couldn’t bear to see his heartbreak too. I told my mom during this time that we would have to move. That I wouldn’t survive having to go back to our lives and work as “the person who lost their baby.” There was no way I could put that into a silo and pack it away.

Jason and I would just sit with each other and stare. We are quality of life people. We knew that if he did survive birth, we would have to immediately make the hardest possible decisions on how to proceed, knowing that whatever decisions we made could make his short time with us even harder or more painful. We had not decided on a name, but knew we needed to have one picked out before he was born, so there would never be an instant in his life that he was not known by his name. We loved the name Theodore, but also wanted him to have our names, so that he would forever be linked to the two of us. The two who wanted him so desperately and fell in love with him the moment we got the positive test. So in those first few days in the hospital, we decided on the name Theordore and since he had always been our gummy bear in the ultrasounds, we would call him Teddy for short. We smiled when we decided his name, but the weight of all of it was beating us down.

All the while my polyhydramnios was causing more pressure and breathing difficulties. At 7 months pregnant, I definitely looked 9+ months pregnant. The talk about Trisomy-13 continued as well, so the doctors decided they wanted to do an amniocentesis for more genetic testing. At first, I was against this. I knew the risks could be early delivery, but ultimately, we decided to go ahead and have it done. One reason was that if we knew he had Trisomy-13 or another deadly genetic condition before his birth, then it would help us know better how to proceed with those difficult choices we knew we were going to have to make after his birth. Also, while they were doing the amniocentesis, they would be able to do a fluid reduction, which would alleviate some of my pressure and breathing difficulties. So, in the end, we decided to schedule it and it happened on a Monday morning (8/8/2016) which was exactly 32 weeks to the day. After the procedure, I was nervous but remember feeling physically better overall, because the pressure had been relieved a little bit and I could finally take a deep breath again. Also, we felt relieved because we would know the genetic outcomes before his birth.

As the day progressed, we tried to not stress as best we could. I asked Jason to get us Smashburger for dinner. I was sitting up in bed, eating my burger and whoosh, my water broke. I immediately started panicking and Jason ran out the door and grabbed the nurse. She ran in and immediately started calming me down. I just kept saying over and over it was too soon. A flurry of activity began. The first round of steroids were given and thankfully because of my polyhydramnios I still had enough fluid to keep him comfortable, even after the flood of my water breaking. They gave me medicine to try and stop the labor, but after 24 hours it was clear that our gummy bear was ready to make his entrance. So I was moved to a labor and delivery room and the preparations for his arrival began. I started my first of 3 rounds of magnesium because of my elevated blood pressure. Magnesium made everything that was going on, even that much worse. I felt like my insides were on fire. I kept telling everyone I was okay but didn’t think I could survive another minute. As we got close to 48 hours after my water broke, my labor started to go into full swing. Another round of steroids and magnesium started.

We still didn’t have the amnio results yet and the fear started growing. I remember telling Jason that no matter what happened, he had to make sure I was able to touch Teddy before they took him away. I told him over and over and over they had to make sure they let me touch him before they rushed him to the NICU. Over and over and over again. I told him he had to go with him, no matter what happened. As the night went on and the labor progressed, the magnesium and medicine they gave me made me confused and I couldn’t process my feelings and didn’t know how to feel. This moment that should have been so happy, was full of fear and sadness. The world was swirling around me, and I couldn’t catch my breath. The next thing I knew, they were saying it was time. It was 3:15 in the morning on August 10th and they told me I would need to start pushing soon. There had to be at least 20 people in the room, ready to do everything they could to save his life the moment he entered the world. I just kept saying to myself as I rubbed my belly “We will get through this together, We will get through this together….”

And I have never been able to eat Smashburger again.


The only picture we took the whole week in the hospital and the reason I asked for Smashburger!

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