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Tuesday, March 3, 2009

San Franscisco

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.

6 comments:

Melissa said...

Jessica- I have left you a couple messages and I know you are extremly overwhelmed. I want you to know we are praying for you. We miss you and wish we could help you in any way. I hope that you can keep us up to date on your blog. I talked to Laurel and she said you guys are over minutes on your cell phones and so I'm hoping this is a way we can communicate. I'm sure there are a ton of people calling you, trying to find out how you and Tyson are. I don't have a web cam so that won't work but I hope you don't mind if I just leave you tons of comments on your blog. I know you will have a lot of time on your hands the next few months and so I thought I'll just write you through our blogs. I hope you know much we love you and your family. We want to do anything we possibly can. Please, PLEASE let us do anything for you. I'm sure Jared will be coming home soon to go back to work and I want to have him and little chloe over for dinner. I'm so proud of you. You are an amazing mom, wife, friend, and daughter of GOd!!! I'm so glad we have gotten to know each other and I pray for you and your family. I feel like this is the only way I can help you is to give you encouraging words to read. And let you know we can't wait to have you and Baby Tyson home so we can have BBQ's this summer with the kids playing on our swing set. We bought a nice swing set that the kids will love!! I can't wait to hold that little angel in my arms. I'm so glad that you received your answer from Heavenly Father. I haven't heard very much abour how the surgery went but I can't wait to hear from your perspective! And wowsers about San Fransisco! Aren't you kind of glad we live a really sheltered life here in Stansbury Park!! You guys are such wonderful people and I can totally piture Jared in my mind wanting to help that poor woman covered in blood. I can't tell you enough how much we are all thinking, praying, and hoping the best for your little family. Our street isn't complete with out your guys and we can't wait to have you back!!!! Love the cox's

Jacque said...

I'm so glad you decided to take your blog off private...but if you decide to again add me so I can check on you! I've been wanting to talk with you to see how you are doing but I know that's probably too hard to do and I'm sure you have tons of people who are wanting to check on you too. What email works best for you? I wrote you a letter then found out about San Francisco. I want to email it to you so let me know the best place to send it. Then hopefully we can keep in touch that way while you are away. I think about you all the time and you and your cute family are in my prayers! (I still have your darling Christmas card on my fridge) Jessica I am so amazed by you! I love you and hope I can hear from you soon! My email is jelwess@gmail.com. Just send me a quick email from the one you want me to use. Love ya girl!

Jacque Elwess

Jaci said...

Wow Jess, you had me laughing with this post (the hotel description) Cringing (the rats and Haight street) and sobbing (your feelings as parents as you make such huge decisions for baby Tyson.
I am overwhelmed thinking how you are handling all of this. I thought you were so brave when you bought your house on your own (when Jared was away working) but look at this! You have more courage than I could ever imagine having. I admire your faith, your dedication to your family, and your trust in the Lord.
I am so happy your mom was able to go out and be with you. Mom's just make everything better huh? Tell her hello for me. and I I hope she can give you hugs and hold you. You are her baby just like Tyson and Choe are yours.
I love San Fran and I am glad you got to see a few sights before the surgery. Want to go on a girls trip there sometime? I'd sure love that.
I wish I could take some of your heartache or give you a big hug, but for now I will just continue praying for you. I know prayers are answered and that angels are watching over you.
Love you Jess!

Dave and KayDee said...

Wow! Jess, you two are amazing parents! You are so brave! Know that our prayers will continue to be with you and your little family.

mandycamp said...

You are seriously amazing! I couldn't imagine having all the tests and ultrasounds and MRI's and then having to decide what to do. I am so glad that you were given the answer you needed. You have such amazing faith in god!I think of you and your family daily and you are all in my prayers. Stay strong and positive and know that you have done everything that you can do to give Tyson the best chance at a normal life.I love you so much and miss you tons. I wish I could come and visit you! Let me know if I can do anything to help. I love you tons and I can't wait to meet your little angel.

Leesee Girlyfield said...

Oh, I am so glad to hear everything went so well. We have been so worried about you guys. I wish so much that there was something we could do for you to lighten your burdens. These are some scary times for you but Heavenly Father wouldn't challenge you with anything you couldn't handle. You and Jared are extremely righteous people to be faced with such trials. We will continue praying for you and little baby Tyson and hope to hear only good news from here on out. Love you!!!!