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.

Gender Reveal

We found out last week that we are definately having a BOY. We couldn't be more pleased about it, not to mention that we had a hunch from the beginning that's what it was so it's nice to be right.

While it was really fun finding out the gender, I knew that we weren't just looking at that we needed to check everything and make sure he's growing like he should.  Our doctor informed us after the ultrasound that they found an abnormality. He sent us to a specialist, who we were able to get in and see the next day. Dr. Beauchamp is a perinatoligist. She confirmed that our baby does in fact have a defect. He has a neural tube defect called Spina Bifida. Malone and I were able to consult with a neurologist right after the ultrasound who gave us more information and gave us our options. We have two options, which both require surgery. The first and common option is to go to University of Utah, have the baby, and transfer him over to Primary Children's Hospital and have a C-section at 37 weeks and operate on the baby immediately. Or we can operate prenatal, or while still in the womb. The second option has had really great results overall giving the baby a better chance at a normal life. Malone and I are taking a few steps towards the second option, doing a prenatal operation. There are a few steps to take to first find out if we're even eligible for this operation, which will require us to go to a hospital in San Francisco. The University of San Francisco is one of three hospitals in the country that participated in clinical trials with this procedure. So right now we are just doing some preliminary exams before we even go out to San Francisco. There we'll spend 2-3 days doing all sorts of c-scans, ultrasounds, and everything to find out exactly what we're dealing with. We'll talk to all the doctors and people we'd be associating with during that time. If they find us eligible for this procedure, Malone and I will have to decide if it's what we want to do. If we choose to not go through with it, we'll come home and proceed with option one. If we choose to continue and do the procedure, we'll stay in San Francisco. I'll have the operation, spend a couple days in the hospital. Then once I am discharged, I must stay in the area for 2-3 weeks for follow-ups. During that time I will be on pretty strict bedrest. If I show no signs of premature labor, I'll be able to go home and finish up my pregnancy there. Then at 37ish weeks I'll go to Primary Children's in SLC and do the C-section there. If all goes well, our baby will have a decreased chance of needing a shunt, increased chance of better mobility/motor skills, and decreased chance of permanent chari malformation in the brain.

The entire situation is terrifying and heartbreaking. There is so much that is unknown at this point it's hard to plan on anything really. Malone is still in school, his last semester. He's had to skip a few classes to go to Dr. appointments with me and is struggling to keep up. He notified his teachers of our situation, and most of them were really good about working with us. One of them was really stubborn and told Malone to defer this semester and come back next semester. This is not an option for us. Malone has already looked into getting jobs following his graduation and with the baby coming, we just HAVE to be done this semester. We are hoping that this teacher comes around.

Busy week!!

Malone and I have been keeping busy the last week or so. Malone had this big assignment for one of his 3D modeling classes. It has taken him weeks to get this assignment done. This weekend alone he spent about 10 hours or more on it. He had to draw up a cabin for a client on a design program on the computer. Then he had to transfer that over to another program, and then physically build it out of wood. When he brought home the pieces it looked like hundreds of tiny pieces of a 3D puzzel. He spent alot of time working on this project with the very little time he has. I am proud of him and all the hard work he put into it. It turned out really cool!  I feel like I can relate to these kinds of things because of all the time I had to put into my art classes. I guess in a way we are both artists!

 

 

As for me, this week I have been spending my spare time working on top of my already full time work schedule. I design and print signs for Broulim's. Because I already have two jobs, I end up doing most of this at night after work. As time goes on in this pregnancy, it's getting harder and harder to stay at night. I feel overexhausted sometimes. In the last pay period I spent about 15.5 hours on top of a regular 40 hr a week work schedule doing signs. I'm not sure how much longer I can handle working this much. And while I try to set limits so I still have time at home getting things done, spending time with Malone, and sometimes resting I have received complaints that I am not available enough. People can't seem to understand why I can't get their orders out faster. Everyone orders these big orders and expects it done the next day without considering the fact that am forced to do these at night and I have other people ordering with the same expectations  everyday. After working this much the last two weeks, this weekend I woke up with a really bad head cold. I get colds when I have a combination of high stress and not enough sleep, which doesn't really surprise me. The work doesn't end, so now I am working alot WITH a cold, which makes me even more tired.

 

As far as the pregnancy goes, however, I am doing great. I am 18 weeks along this week and I feel fine, just tired in the afternoons as usual. I haven't been careful about how much I have been eating lately so I am worried I might be gaining too much weight too fast. I haven't felt the baby move yet, which is sad because I really can't wait! And I want to have a comfort in knowing it's growing and moving like it should... but I am trying to be patient. I find out in 2 weeks what we're having! Seriously so excited! And I wanna get shopping!

 



Weeks 16 & 17

So far so good! I had my 16 week appointment last week, and Dr. Allred says "it sounds like a happy baby". We just checked for the heartbeat, which is less exciting than an ultrasound. But the BIG ultrasound when we check all the organs and gender is NEXT appointment, June 5th. I am so excited! Right now I am looking forward to not only finding out what gender it is, but I am also excited to feel it move. I should be feeling it move anytime in the next few weeks. I can't wait! So far things have been so surreal, it's hard to believe there is actually something inside there. I've gotten a bit rounder, but I think when I feel it and see it in ultrasound, it'll be really real for me. I am still sticking with the idea that it's going to be a boy, but I sometimes am unsure. Can't wait to find out! I have been looking at some maternity clothes already ( I already can't fit into my shorts from last summer, no surprise there) and some of my t-shirts. So I figure I might as well start shopping. I really like the stuff on this website, I think I could really spend alot of money here...

Last week Malone and I bought a new laptop. The one we got when we first got married is having alot of problems so it was just time to upgrade. It's an HP pavillion, we got it for $599 at Costco. Having this computer will help Malone with his schoolwork hopefully. He's got two 3D autocad drawing classes. It's basically a 3D modeling class using digital graphics. It's actually pretty cool, just really time consuming. He's also taking construction law, and methods and materials. Recently, Malone was given a raise at work, which couldn't have come at a better time! We can use all the help we can get with this baby on the way. So we were very excited for that. He is still working in the meat department at Broulims