This is a long post and may have grammar error because I am horrible at english. That is why I have to Sarah edit all my papers. I want to write about this whole experience in detail so Tyson knows what we did for him.
I thought I would start with our story of San Francisco. Jared and I arrived Sunday, March 22. The place we were staying at was called Inn 1890 an old historic home that used to be owned by a queen. They used to preform illegible medical practices. We got there late so we had to use there late check code. We walked in a little eerie, a big mansion with the lights on. There were no people to be found inside. We walked upstairs where we were supposed to be able to check in to our room, Room # 7 which was locked. Let me remind you we were carrying our 3 huge suitcases and 4 carry-on’s up-stairs. Still no one around as we walked around upstairs we passed and old library with books and a dim light on. Then we came to a kitchen completely dark with a pan boiling on the stove. Meanwhile Jared and our laughing but thinking we are part of some scary movie. Finally we found a girl who was able to check us in to our room. It was quite the interesting place to stay but after a few nights we grew to like it. Monday was followed by meeting with about ten doctors, nurses and practitioners discussing risks, benefits, and possible out come for our baby Tyson. We also had a fetal echo on the babies’ heart as well as another ultrasound to add to the million we have already had. Did I mention I hate ultrasounds and don’t want any more if we have more children, they always bring bad news for us. Plus they are extremely painful especially after fetal surgery and Tyson hates them two he hides so I always end up on the my tip of my head or in several awkward positions to get the shots they need. They baby was moving his hips and legs so good. The doctors were quite surprised because most babies with spina bifida have paralysis. Even though it is likely Tyson will have some paralysis we think he will walk because of his movement in his legs. Also the baby has no clubbed feet which we are extremely grateful for. The babes heart looked amazing. All the doctors kept telling us that our baby looked so good on the spina bifida spectrum. Meanwhile Jared and I were overwhelmed that we had been guided to San Francisco and unsure what to decision to make. The doctors were so open and honest and so incredibly to us no one made us feel obligated or pressured us to join the study. I will honestly cherish the doctors, nurses and staff of MOMS forever because they care so much about making a difference in children with spina bifida. They make me feel like a hero everyday and treat me like family when I am many miles away from my own. Monday night Jared and I were both tired from such a big day and decided to just eat close to where we were staying 1890 and Paige Street. There was a list of restaurants in our Inn that were all Haight street that were supposed to be good so we walked one block to haight street. The minute we turned on the street I felt like we were in a rough area. After walking down the street for minute, several homeless people staring at my sparkle jacket and big Gucci purse wanting money. I said does pizza sound good, Jared agreed pizza sounded fine and we crossed the street to the New York City Pizza. The restaurant seemed a little unclean but the food seemed like it looked good. Besides there was a whole crew of homeless people chilling outside singing songs. We got our food set down and started eating. The table that we picked was right by the entrance into the restaurant. The whole time I am a little freaked out about the environment that we are in. A homeless guy reaches in the garbage can right next to me and grabs a piece of pizza the whole time Jared is telling me not to freak out. I watch several drug deals go down right outside the window. Just as I am telling Jared I want to leave this man reaches in the garbage can to grab some pizza that someone has thrown away and he has a pet rat in his pocket and that is just inches away from me. Ohh YES! Don’t eat on Haight street. We left and had a bum follow us to our Inn. It was pouring rain so by the time we got back we were soaked. Tuesday was a short day meeting with a few new doctors including Dr. Farmer, the anesthesiologist Tycon who is also one of our favorites and few others. We were done by lunch at headed to tour San Francisco. We decided to take public transportation the Muni, trains and buses. We had not a clue where we were going but made it around somehow. First we got get kicked off of the train because the bus was “going out of service”. We didn’t know where to go once we got kicked off so we decided to go into a safeway close by and buy some snacks. We bought our snacks and was standing outside to catch another train. As we are getting on this crazy lady is screaming at Jared, “Help me” crying hysterically. I look back and her and face is covered in blood and she is yelling weird things. The train door shuts on her and Jared is trying to help her. I am scared so I am trying to get away and Jared is a little freaked out but doesn’t want to leave her. She is yelling that stupid Bi***. Anyways I think she had some psych issues but someone must have beat her up. SAD! Finally we made it to Pier 39. We walked around seen Alcatraz, the sea lions and enjoyed the nice whether. As we are making our way back through the pier a performance was taking place and Jared is picked out of the audience to participate. It was quite hilarious. I wish could all see his performance. We then went to Fisherman’s Wharf which I loved and want to go back soon. It was darling fun town with lots of shopping and yummy places to eat. We then went to Chins Town which was interesting. We bought Chloe a darling baby their that she will love, did I mention my heart aches for her. All day Jared and I were still unsure what decision we were going to make. That night we talked and Jared said he felt sick about it and did not feel it was right thing to do. He also said he would support me if I felt it was right. I felt more like it was right but felt we should both feel strongly about it. I felt like I needed heavenly father to just come down and say yes do it or no don’t do it. I felt like I needed a clear answer of what to do that I could live with for the rest of my life. We went to bed with no answer. I did not want Jared or I to have regret either way. I had a MRI of the babe early Wednesday morning. The MRI took forever because the baby did not cooperate as usual he always moves and swims like crazy when we need him to hold still. (although it is sigh of relief to feel him moving because that means to he is healthy) While I laid still in the MRI tube for two hours I thought about our decision. When I got out Jared and I went to breakfast and a little breakfast place called Panera, Jared asked my decision, I told him I decided we would not join and fly back home to Utah and finish our care their. I told him I had a few doubts and figured it probable was not right if I was having doubts. f I felt we should move forward and not look back. We talked about what and amazing experience it had been just to fly out and get tons of information on our babe that we would have not received other wise and how we felt so blessed. Jared started crying because he felt so over whelmed. We got a taxi back to the fetal treatment center at UCSF and said a prayer and discussed how we would tell the team that we were not going to participate. As we arrived our favorite nurse Tamara said that Dr. Farmer the head women fetal surgeon in the world would like to talk to us about our MRI results. She was booked with meetings all day but said she could step out a few minutes because she felt like it would be important to go over our MRI results. We had talked to her the day before and she told us it was completely our decision what we choose to do and was super sweet. We went to her office and sat down, she told us most everything was the same but the babies Charii malformation was very severe in fact the most severe, she had ever seen. The doctors had never seen this in 25 years. We were shocked because we had heard such good news all week. We asked her what this meant and she told us that the brain was being pulled clear down into the neck and this meant there was possibility he may never be able to breath or eat on his own. They told us that it if we chose not to do the study they would send our results to primary’s because it would be important to know because he may have to be intubated immediately after birth. Jared and I completely in shock told Dr. Farmer that we had choose not to do the surgery this morning but this had possibly changed our minds and asked if we could have more time to discuss things. This totally through us for a loop and we were both just sobbing not knowing what to do but felt pretty clear we had received our answer to our prayers. Dr. Farmer told us that she always stays neutral and lets the family decide and has never gave her opinion but said that from surgeons point of view she felt strongly that we could significantly help with charii by participating in the study. She also told us that it was completely our decision and we had to do what was right for us. She also told us she would not think any less of us if we did not participate in the study. The risks may out weigh the benefits for us. After a little discussion we decided to be randomized into the study which means we had 50 percent chance for pre-natal surgery and 50 percent chance for postnatal. We sat I the conference room waiting for our results and I knew and felt that we would be randomized to pre-natal surgery and spend the next 4- months in San Francisco. We were admitted that night for surgery the next morning at 7:00 A.M. Next thing I knew my sweet, beautiful mom was one her way out to San Francisco to be with me and Jared during this scary time in our lives. (Thanks Nate and Natalie Williams) Jared and I can not “thank” her enough. I am not sure we could have done it with out her. I will give an update later about the fetal surgery experience and post some amazing pictures they took of surgery. I am still in the hospital but will be moving to hospital housing soon. I will update when I can.
2 weeks ago