San Francisco- Days 4-7

After our decision was made with our nurse, Malone and I were done. We left UCSF and had the rest of the weekend to do what we wanted before we headed home. When we got back to the hotel, we went ahead and made arrangements for our flight home on Monday. After that we drove out to Oakland where we rented our car and got a new car rental. When we rented our first car, we only rented it till Friday so we needed to return it and re-rent (long story). Since we were in Oakland, we decided to go check out the Oakland Temple. It was only about 20 minutes from the car rental place so we figured why not? I can definitely tell you the second we stepped foot onto temple grounds it felt different. I felt so comfortable and peaceful like coming home. Even though I had never been there before, it felt familiar. We walked around the grounds and took pictures and we visited the visitors center. It's a beautiful place! I loved it! I am so glad I am part of a church that is the same no matter where you go.

 

After visiting the temple we went back to the hotel and relaxed the rest of the day. Saturday we slept in, got ready and went to the mall nearby. We walked around checking things out, looked for some shoes for Malone, with no luck. There was a movie theater connected to the mall so we went over and bought some tickets for that afternoon to "The Lone Ranger". We decided to go grab some lunch before heading to the movie, so we went to Hooters! Malone hadn't been there before and we were both craving wings. When we got there we were watching one of the TV's that showed the news. An airplane had crashed at the San Francisco airport just a couple miles from where we sat! The pilot was flying an airplane that was new to him and he came in too low hitting the back end of the plane on the runway tearing it off. Two people were killed many were injured, some in critical condition. It was just a fluke thing. I couldn't believe something like that was happening only a few minutes from where we were sitting. I admit I was grateful that wasn't the airport we were flying out of Monday.

After lunch we went to see our movie. We got there really early and got good seats. "The Lone Ranger" was really quite good! I liked it, but it's not a movie I'd run out to buy. Malone really liked it though. After the movie we went back to the hotel and hung out some more.

The view outside of Nick's restaurant

Sunday we decided to just take a drive and see where we ended up! And it turned out great! First we drove up towards Golden Gate Park, but a lot of the roads were closed off for the day so we connected to the Great Highway that runs all the way down the west coast. We stopped at the beach for a few minutes and walked around, collecting sand dollars. It was windy and kind of cold outside and of course the water was freezing, so no playing in the waves for us! We continued on down the coast and eventually stopped for lunch at a little café called Nick's. It had a beautiful view of the coast and apparently had some good seafood. I ordered some fish and chips and Malone got some fish tacos. All were so good! I'm not big into fish, but I enjoyed the fish I got a lot! That's saying something coming from someone who doesn't love fish. After lunch we continued down the coast, briefly passing a place called the Devil's Slide, which is basically a rock face that stretches into the water. I didn't get any pictures because we just drove past it. We made our way down to Half Moon Bay and decided it was time to get going home. Malone and I loved the trees and hills out there. There were lots of big vegetable gardens people sold local produce out of, and a little bit of farmland too. It felt good to be out of the city and into some countryside, and so close to the ocean too. It was a beautiful place! We crossed Crystal Springs Reservoir  and made our way to the bay side of the peninsula and back to the hotel. It was kind of fun to just go drive and explore not knowing where we were going to what we'd see out there. We had a really great time!

Monday finally rolled around and it was finally time to go home. I was actually really glad to go home. It had been the longest week ever and I missed being home. We packed up and headed to the airport around 9:30 to catch our 12:30 flight. It took us about half an hour to get to the rental place to drop off the car. We were able to catch a shuttle back to the airport and from there we had an hour and a half to get to our gate ( we had to be there at least an hour early ). We finally found where we were supposed to get our tickets and the line was LONG. We waited in line for about 30 to 45 minutes. By the time we got our tickets and went through security, we had 10 minutes to find our gate. Luckily our gate was right by security and we got there with 8 minutes to spare. How lucky! Of course we had to wait about 20 minutes before we could board, but I was glad we made it. We flew home and my mom picked us up from the airport. It's so nice to be home!!!

San Francisco- Day 4- Our Decision about Fetal Surgery

Day four of San Francisco we had an appointment back at UCSF to follow up with our nurse. After all the information we received the first two days, Malone and I had a pretty strong feeling about what our decision about surgery would be. Before we had even come out I had been leaning towards not doing surgery. After coming to San Francisco, it only confirmed what I already knew; this surgery wasn't going to happen for us. There are a lot of reasons why we decided no to do the surgery.

The biggest reason for me is if we had done the surgery, it would have left me with a big scar on my uterus. This scar weakens the uterus to the point that my doctors told me that I would never be allowed to go into labor ever, not even with future pregnancies. When the uterus gets stretched out with baby and already in its weakened state, I'd be at risk of uterine rupture if I went into labor. If I had done surgery, the rest of my pregnancy I'd be extremely fragile. No lifting (more than 5lbs), I would be very limited in what I could and couldn't do, I wouldn't be able to work, and I'd be mostly on bed rest. This is all because when the surgeons do surgery on the uterus like this, they are tampering with a muscle that doesn't like to be tampered with. When it's tampered with it wants to contract. And so after surgery, it is extremely important that the uterus does not do this. You've got this incision that is trying to heal itself AND stretch because baby is still growing. That puts a lot of stress on the uterus. So I would have had to be on all sorts of meds to keep that uterus relaxed throughout the rest of pregnancy. If the uterus starts to contract and my water breaks and I go into labor, my uterus could rupture. As I said before, this isn't just something that affects this pregnancy, this is what every pregnancy from now on would be like. This is our first child and we had hoped on having more in the future. We have a long way to go, and I don't want to be a ticking time bomb every pregnancy. Pregnancy is scary enough as it is.

Another big reason for our decision is that it increases the chance of our baby coming premature. This is common with fetal surgery. With the surgery, babies average about 34 weeks gestation. There have even been some babies that come around 28 weeks. For us, we didn't want to take a chance that our baby could be born this early because prematurity brings on a whole new set of issues that can happen. It could make things even worse for him. Plus he'd be stuck in the hospital most likely till his due date.

Those two things were the biggest reasons we didn't do surgery. Of course with every surgery you have all those other things, though unlikely, that could also go wrong. There are always risks with any surgery. These didn't bother me as much as the other two big things did. There was a concern about my care after the surgery. After discharge I'd have to stick around for  2-3 weeks just to make sure I was doing ok and that I wasn't showing signs of preterm labor. If everything went well then I would have been able to come home. But I would have still been fragile and my doctors worried that if anything were to happen, if I would have the proper medical care here to take care of me in my  condition and the condition of the baby. This was a debatable topic. Overall, we decided the best thing to do would be to relocate to Salt Lake City to be near Primary Children's where there would be doctors who could handle this situation if anything went wrong. While I am more comfortable with the idea of living in Salt Lake than San Francisco, having to relocate would still be a pretty big deal for me. Finding somewhere to go and someone who could take care of me 24/7 for the rest of the pregnancy would have been difficult I think. While this option was possible ( we probably could have worked something out ), it just weighed against the possible positive outcomes.

Another reason against the surgery, for us, it felt like a big gamble. We'd be gambling all these risks for just a chance that things would be better for our baby. There are no guarantees of the outcomes. The babies that have had this surgery are still at risk of needing a shunt, and there is a chance that it might help with motor function, and it might help reduce the malformation in the brain. Babies that don't do FS and wait till they are born might be a higher risk of needing a shunt, but a whole lot less likely of being born early and having all those problems in addition to what they've already got. And for us based on the condition that our baby is currently in, we felt that he had a better chance than most kids because his condition is somewhat mild compared to what it could have been. His lesion is low, and small, and covered, he has no club feet, and the malformation in his brain is minimal. There is a chance that the malformation could change between now and when he is born, but it was the only risk we were willing to take.

While I am a little bummed that the surgery didn't work out, I feel good about our decision. It's almost a relief actually because now our lives can somewhat go back to normal. I can go back to work, Malone can go back to work and school, we can continue to take care of our dogs and be in our home. As far as our plan about what  will happen when the baby is born I don't know exactly yet. We'll need to get in touch with our specialist in Idaho Falls and our nurse and get that all figured out with doctors down in Salt Lake City and possibly even visit down there.

For now, I can have peace of mind that we are doing the right thing that is best for our family. And I have faith that things will work out okay. We have lots of support from friends and family who are willing to help us. This experience has truly showed me how much love my Heavenly Father has for me and my little family and how he takes care of us through all those people who go out of their way to serve us and help us at this time. I feel very blessed to have them in my life and for the perspective I have gained through this experience.

4th of July in San Francisco!

At first we debated whether to go out or not because we didn't really know where to go and we worried about traffic/parking and stuff. But finally we got brave and decided to just GO! We grabbed breakfast at IHOP and drove up to see the golden gate bridge and pier 39 around 11. There was a big parking garage for the pier so we were able to find parking just fine (even though it was expensive!).


The first thing we did was buy tickets to cruise for an hour around Alcatraz and see the Golden Gate Bridge. We boarded the red and white fleet at about 12pm. We got out on the water and wow was it WINDY outside! My hair was all over the place and it actually got a little cold. Luckily I took my jacket with me. We must have taken a dozen pictures while we were out there.


Malone with Alcatraz in the background



Red and White Fleet Cruise Ship

Me and Malone on the boat

Golden Gate Bridge



Alcatraz

After cruising around the bay, we just explored the piers. We went to a little museum full of vintage arcade type games. Not just like, video game type things, but old old games from like the early 1900's. It was sort of fun to just take a look around. You can actually play all the games there too, they all work. There were a ton of shops and stuff too, like one shop we stopped at was a kite shop! We eventually made our way over to Pier 39 . Of course there were a ton more shops and all sorts of restaurants.

Then we stopped for lunch at... BUBBA GUMP SHRIMP! Super based around the movie Forrest Gump, and it was way busy but it was dang good. I ordered some coconut shrimp and Malone got some hushpuppies and deep fried jumbo shrimp. Yum! I was stuffed!

Bubba Gump Shrimp

Us at Bubba Gump Shrimp

 

 

After lunch we walked over to Fisherman's Warf and walked around looking at the street performers and checking out more shops. By about 5pm we were getting exhausted... well at least I was. Walking around in the heat in flip flops while pregnant? Yeah. Fireworks didn't start for another 5 hours and I just knew I wasn't gonna make it haha. Even though I love fireworks, we decided it was time to go. So we found our car and headed home. There was a TON of traffic coming in, so I knew it was gonna get really busy. And I was glad to avoid crazy traffic later that night after the fireworks were over. We got home and got cleaned up. And boy were we both SUNBURNED. Our faces, scalps, arms, necks, and my chest were fried! I was afraid that would happen since we didn't even think about sunscreen. I thought we had stayed indoors enough, but apparently not. Ouchy! Later that night we went out and got us some ice cream because the preggo lady wanted some like BAD haha. Anyway, it was a really fun 4th and we both had a good and memorable time!!

San Francisco day 2

Wednesday July 3, day three of our San Francisco adventure. I woke up with a really bad stuffy nose and sore throat. Great. Our first appointment was at 9:00 to visit with our FTC Nurse Janice and then our Anesthesiologist. Our anesthesiologist, Jennifer Lucero, walked us through the process of putting me to sleep during surgery and keeping my uterus relaxed throughout this whole process. We talked about the meds that I'd be on and the epidural I'd need and all sorts of things. It was a short appointment. After talking with her, my next appointment, a fetal MRI, wasn't until 1:30.  So we hung around campus for about an hour and then decided to go ahead and take the shuttle to where I'd have the MRI, which is across town at the China Basin campus. So we hopped on the bus and rode around downtown San Francisco. San Francisco is a packed place!! So many little tiny townhomes squished together on these narrow roads. Every house here is a townhouse, but they all look so different. All sorts of crazy colors and styles everywhere we went. I told Malone they must paint their houses crazy so they can find it because all the houses are so similar. VERY colorful houses here!  The bus ride experience was a combination between the Indiana Jones ride at Disneyland and the bus ride Harry Potter took in the third movie where they go really fast and squeeze in between other buses. We literally squeezed through some of the tiniest places and zoomed through all this traffic, meanwhile it was extremely bumpy and swervy inside the bus. It was a crazy ride! I was so glad I wasn't driving, I could just close my eyes and find a happy place haha. It was so hot too, so by the end of the ride I was about ready to be sick. The ride took about a half hour to 45 minutes long, just to get around town.

We finally arrived at the China Basin campus for my MRI about at about 12:15, an hour early for my appointment. We decided to go ahead and check in and just wait there. About 10 minutes after I checked in they had a no-show and just decided to take me early, which was nice! The whole MRI experience is completely new to me. I had been fasting since 10am to help keep the baby calm and not move as much during the MRI. So by the time I would get done with the MRI I would be literally starving!  I had to get changed into these one-size-fits-no one pants and a couple gown tops to cover me front and back. The pants were literally 8x too big, I could barely keep them on! I walked into the MRI room and they had me lay down on this little table that wheels into the MRI. They strapped me in and made sure I was comfy because I was going to be a while. The first set of MRI pics were of the baby's head, which take and hour and a half to do. And the second round of pics would be of the baby's back, which takes another hour and a half. I was supposed to lay there in this narrow tube for an hour without moving! What?! At first I did feel a little nervous and not sure what to expect, but after a while I was able to relax a bit. I had to have hearing plugs put in my ears because the noise of the machine is soooo loud. Even with them in my ears, the banging and beeping the machine made were extremely loud, making it hard to relax. During the first round, we had hoped the baby would be calm from me not eating. But this was NOT the case. I have NEVER felt him move so much ever! He kicked and wiggled and kicked like crazy! I almost started to laugh it was so ridiculous. The first hour went alright and I was able to have a break in between sessions. The tech and I just laughed at how much the baby was moving the first hour. The second hour was a little harder to relax, since by then I had a hard time not moving. My back was getting tired and my arms were falling asleep.

FINALLY we were done. And we got done a lot sooner than expected too, an entire HOUR early! I walked out of the MRI place and I was tired and starving. We rode the crazy buses back to campus (which felt like FOREVER) and we got some food to eat at the food court. By then is was almost 4pm, and neither of us had eaten since 9:30am. After eating a late lunch we got in our car and headed back to the hotel. I literally passed out that night too.

Week 24- San Francisco Day 1

We have finally arrived in San Francisco. We flew out of Idaho Falls via Allegiant Air Monday afternoon. We arrived in Oakland at about 5:30, rented a car, and somehow managed to arrive at our hotel in south San Francisco. Navigating in this city has been a nightmare so far, which is what I was afraid of. And we have been completely dependent upon our phones to guide us. We have somehow managed to find our way to where we need to go, but haven't been brave enough to venture to anywhere we would like to go and visit.

The Fetal Treatment Center at UCFS

We have  whole itinerary planned for the next few days. We will be meeting all the doctors that will be on the surgical team/ staff involved with surgery and post surgery; the Perinatologist, Fetal Surgeon, Pediatric Neurosurgeon, Anesthesiologist, Pediatric Cardiologist, Radiologist, Neonatologist, and our Fetal Treatment Center Nurse. First thing this morning (Tuesday July 2nd)  we woke up bright and early to drive to the Fetal Treatment Center at the University of California San Francisco Medical Center.  Our first appointment was  my ultrasound appointment. UCSF is in a very old looking residential area. Narrow streets, one way streets, traffic, lots of pedestrians... typical city stuff. The ultrasound was a pretty routine ultrasound, taking measurements and looking at things. The radiologist found nothing new from our previous  ultrasounds and everything she did see is typical SB stuff. We then went to the Fetal Treatment Center and met with our FTC Nurse Janice Scudmore. She is the one who organized our itinerary and organized our appointments with all our doctors. She's our go-to gal for any questions or anything at all. I really liked her a lot! We were supposed to meet with our Perinatologist, but he was in surgery. So we  took an early break for lunch for a couple hours. Malone and I went next door to the food court, ate, and hung out. At about 12 we met with Dr. Larry Rand, Perinatologist. His basic job is to take care of the mother throughout surgery and after.  He laid all the information out there, good and bad. He told us all the benefits and risks of surgery. We talked about the condition our baby is in now. And what we can expect before during and after surgery. I am glad that they didn't sugar coat anything because the whole reason we came here is to find out EVERYTHING there is to know about our baby and our option with fetal surgery. Turns out we are good candidates for the surgery as well, which is also why we are here.

Just hanging out waiting for our next appointment

 After talking to Dr. Rand we went across the street to another building where we had an appointment for a fetal echo. An echo is an ultrasound that specifically focuses on the baby's heart. This only took about 30-40 minutes. Everything came back normal, which is great!

 

  So here is what we know so far: baby boy has some Chiari Malformation in the brain, which is to be expected with SB. Normal babies heads are at a 10, and our baby's head is at about an 11. So it's not too bad right now, just a slight malformation. In fact, you almost couldn't tell on the ultrasound, I thought. Baby has a healthy normal heart, which is good. The lesion on his back is low, about L5-L4. It's about the size of your pinky nail right now. So, it's low and it's small, which are both good things. Baby has no sign of club feet at this point, which is a good sign he may not have any problems there. So, basically his condition is mild compared to what it could have been. His head could have been bigger, his lesion could be higher and bigger, and he could have clubbed feet by now. None of that is an issue here, so thank goodness for that!

 

This is the ultrasound of our baby's spine. You can just see the little sack on his low back.

After the echo, we met with Sharon Nomburg (social worker) and Dr. David Rowitch, Neonatologist. Dr. Rowitch is in charge of taking care of the baby after he's born. He told us what to expect with surgery and how they take care these babies after they are born. Sharon didn't tell us much actually. I think she just wanted to know our circumstances, told us where we can stay after we check out of the hospital and such.

 

Then we walked back over to the FTC and met with Dr. Shin Hirose, Fetal Surgeon. His job is to organize everyone on the surgery team. He is the one who opens up mom and uterus during surgery. He gave his two cents about surgery and what to expect, which was very similar to what Dr. Rand had already told us. I didn't feel like we learned much with him, since we had heard everything from Dr. Rand already. After meeting him, we met with our Pediatric Neurosurgeon, Dr. Nalin Gupta. He is the one who actually performs the surgery on the baby (before or after surgery). He is the one who does the repair. He gave us information on how the repair is done, what to expect neurologically with this defect. He told us how babies in the past have done with this surgery up to about 2 years old ( which is as far as the study went with these kids).

 

We learned a ton the first day, and were so ready to go home. We left he FTC at about 6 to go home after being there since 7:30am. It was a very long day and we were like overloaded with information and needed to process it all. We stopped to find some food on the way home and got all turned around trying to get back to our hotel. We ended up at the SF airport where we had to circle round and come back. We finally got back to our hotel and called it a night. I remember Malone getting into the shower at like 8, and I literally passed out.

Week 23- Fear of the uknown with hope for the future

We are officially going to San Francisco July 1st. We'll be at the hospital doing ultrasounds, echoes, and an MRI the 2nd and 3rd, and we'll get our results back the 5th. At that point, depending on if we are good candidates, Malone and I will decide if fetal surgery is right for us. We'll be staying in a hotel about 20-30 minutes from the hospital (it's the cheapest best hotel we could find) and most likely be renting a car to get to and from the appointments. If we decide against the surgery, we'll be home Monday the 8th and the rest of the pregnancy carries on like normal until 37 weeks. If we decide to go forward with the prenatal surgery, I'll check into the hospital Monday night and go in for surgery first thing Tuesday morning.

Since we have found out about our baby's condition it's been an emotional roller coaster. Not a day goes by that I don't think about it. Most days I do alright and I feel positive about it. Some days I just get overwhelmed and can't believe things have turned out this way and I am just sad for our baby. My biggest fear right now is all the unknowns. I feel scared about what our future holds concerning Malone's schooling and finding a job. He is so close to graduating, and has had interviews for jobs that we now don't know if he will get because of school. I am concerned about having to leave work for a few months and living on one income. I am scared of going to San Francisco and possibly having to stay there a while. I've never been there and have no idea what to expect really. I don't know where I'll end up or how things will be after surgery. Right now I don't know how serious our baby's condition is, which is difficult and makes me worry more. I don't know what to expect until he's born what he will be capable of even doing. SO many unknowns right now.

Some days it's hard to feel excited about the pregnancy and having a baby like before. I admit some days I dread it. But I am really trying to be positive and look for things to be excited about. I am excited to see his face, what he looks like, how much hair he will have. I am excited to decorate his nursery. I am excited to buy him clothes and all the stuff he'll need. I am excited to just hold him. I figure, even if he does have spina bifida he will still be a regular baby who needs to be loved and held and fed just like any other baby does. And I look forward to that. And while the whole situation of the unknowns is scary, there are things that I do know that make me feel so much better.

I know that Malone and I have been given this challenge because it is something we can handle together. I know that Heavenly Father is so aware of us and has put people in our lives that can help us and support us. I know that He works hard to give me peace of mind, even if I do have bad days sometimes. I know that he put Malone in my life for a reason, and I am so incredibly grateful for him and the strength and support he gives me. He is so wonderfully supportive in every way, I just couldn't ask for a better husband. I know that this baby is going to be okay no matter what happens. I have a good feeling that things will not only work out, but that this little boy will be an inspiration to me and others in so many ways I never would have thought possible. I know deep down that our lives are in Heavenly Father's hands. If we just let Him, he can lift us up and bear our burdens for us. I have a testimony that this is true because I have experienced it. I am so thankful for the gospel and the strength it gives me everyday. I am thankful to have the eternal perspective that I have to know that Heavenly Father has a plan for each of us. It's what gives me hope and gets me through the day.

Father's Day Weekend and Portland Trip

Last Monday Malone got an email from a company in Portland wanting to do an interview with him. They asked Malone if he could be there within the next 4 weeks. With everything going on, we decided it was better to go sooner than later since we don't know what will happen later with the baby. I decided to go with him and be his navigator/supporter. We left on Saturday the 15th after he got off work. We dropped off Tivo at my parents and Kayto at our friends Kacy and Deidra's in Blackfoot. We drove to Boise that night and stayed the night there. The next day, we spent Father's day driving to Portland. The drive between Boise and Portland is a long boring drive until you get to the canyon by the river which is about an hour outside Portland. That was a beautiful place. We arrived in Portland around 2pm and had made plans to stay with his sister Heidi for the night. We were able to relax and hang out with her all Sunday afternoon. Heidi has a really nice home right next to the Columbia river. There were lots of trees and foliage and in such a nice quiet neighborhood. You completely forget that you're in Portland because it was so quiet you could hear the birds chirping, and no sound of traffic. We called our dads and wished them a happy Father's Day, had chicken enchiladas, and watched Mad Men.

The next day Malone and I got ready and navigated our way to where he needed to go for his interview. We got turned around a couple times, but were able to get him there not only on time, but a smidge early! He interviewed with Swinerton Construction co. for about an hour. The interview went well. Malone feels like he would have a nitch in that company where he could really help out. Both of us would be good with living in Portland too. So we are excited to see where that goes and are waiting to hear back and see. After the interview we drove over to another company, Stacy and Witbeck. Malone had been interviewed by this company a couple months ago, so we wanted to follow up to see if we could get him in with someone involved in hiring but there was no one available. After that Malone and I packed up, grabbed some lunch, and were able to catch up with Heidi at work before we left. Then we hit the road again and drove back to Boise for 6 hours. Did I mention what a long drive it is?! We got to our hotel in Boise, grabbed food, and relaxed all evening.

The next day we made a couple stops and were once again, on the road for 5 more hours. We stopped in Blackfoot to pick up Kayto and visited with Deidra and Kacy. We had lunch there and watched the dogs play for a bit. After that we headed to IF to run a quick errand, and then to my parents to pick up Tivo. Both the dogs did well while we were gone, which was a relief. I am so thankful we had people who could watch them for us! Kacy and Deidra were such good sports to watch Kayto for us. He's kind of a handful, and they have two other dogs and their son to watch too. Thanks to everyone who helped watch the dogs!

Anyway, that evening we got home and realized that we had no car for Malone for work the next day. We had sold the truck two weeks ago and had been borrowing cars from my parents since. But we gave them back the car before we left for Portland.I wanted to get Malone a brand new bike, but they are so expensive and we just don't know what our financial situation is going to be like so we didn't feel comfortable investing money right now. The cheap bikes at Walmart looked like they were going to fall apart. I didn't feel comfortable with that either.  So Malone made some phone calls and we were able to borrow a bike from Malone's brother-in-law Kurt who lives out in Sugar City. It's an older used bike, but it works for now. It will get Malone where he needs to go. Thanks Holly and Kurt!

Despite some of our difficulties and sacrifices, we have seen little blessings. We were happy for Malone to get his interview, and that we were able to get away and get up there so quickly and safely. I am thankful that we were able to find Malone a bike to help him get to work and school temporarily until we figure out what to do, and that was late notice as well. I feel confident that things are in the Lord's hands. Sometimes it's hard to hand over the reigns, but I know He will watch out for us and guide us.