Friday, April 19, 2013

A light at the end of the tunnel...

   Today marks 11days post-surgery for me, and I can honestly say that I am feeling great. I haven't had an contractions or cramps, no bleeding, and I feel our little man moving all of the time! I will admit that I am dying to get up and to move around and to run and lift weights again. I miss working out. I knew it was a big part of my life, but you never truly appreciate something until you can't do it anymore. But this is totally worth it. I would sacrifice whatever I needed to for this baby. I love it when I feel him kicking around in there. I cannot wait to meet him, and finally give him all of the hugs and kisses I have been dying to give him throughout all of this.
  Our big adventure today was a doctors appointment. I was extremely anxious to see how everything on the inside was looking, but I was also extremely nervous that they were going to find some reason to tell me I couldn't go home until after delivery or that something else was wrong with our sweet boy. After yet another extensive ultrasound, they said that our baby boy looks great and is now measuring up to a whopping pound and a half (right where he is supposed to be)! From the ultrasound they were also able to see my sutures on my uterus and they said that it all looked amazing. Now all that I have to do is stay on my anti-contraction medication, stay on bed rest, and help our son stay inside of me until July 19th (when I will be 37 weeks)!
  Here comes that part that I was dreading... the doctor came in to talk about out when my next appointment would be and how much longer they thought I would have to stay out here in Philadelphia. CHOP's rules are that every fetal surgery mother has to stay in the area, post-surgery, for 3-4 weeks and then they might be able to go home. This Monday marks 2 weeks post surgery for me, and I am absolutely DYING to go home. I miss my little Noah and Dante more than I can say. Anyways, the doctor came in and told us that she had been talking to my doctor in Utah, Dr. Ball, and told him that she thought that I needed to stay the full 3 weeks out here, just to be sure that everything was ok. When she told me this I completely lost it, of course I want to do what is best for my son, but my heart is aching to be home with my loving husband and cute baby. The thought of another 10 days sounded awful... I know in the grad scheme of things, 10 days is not that bad, but I have been out here since March 31st, and I have been  so home sick. I felt crushed. Luckily, my mom was with me, and if any of you know my mom, you know that she does not have a problem speaking up when she doesn't agree with something. Long story short, after lots of tears and talking, I have an appointment next Thursday, six days from now, and she said that if everything looks good, she will let me go home. At that point I will 4 days shy of the three week post-surgery mark, so I will technically still be following their rules, but at the same time I won't be out here forever. I can do six days. I feel much better about that, and it has given me a a lot of peace knowing that I potentially have an end date in site. Sitting in this hotel room, staring at the same four walls, just wondering about that unknown about our son and our recovery and how much longer we were going to be out here has been one of the worst parts of my own recovery. I have been praying my heart out since this all began, but especially now I am calling on my Heavenly Father to help me get home as soon as possible. I am so extremely grateful that my mom has sacrificed so much to be out here with me, but I know, and we both agree, that my recovery is going to be a million times better for my own mental well-being to be around Dante and Noah and my loving support group I have waiting for me at home.
  We are more than grateful for the health that I have had and for the strength and health our son has had. He has been healing beautifully from the surgery. I know that once he is born our little man is going to need some more help, but I could not have asked for his surgery and recovery to be going any better than it has gone. After having all of these ultrasounds, I feel like I have seen our baby boy a ton, but I am getting giddy to actually meet this little boy! I know he is going to be a huge blessing to our family, and Noah is going to be such a great big brother. 
  We are still asking that you please continue to keep us in your prayers and thoughts that we can both stay on this road of positive and healthy healing, and that I can get the doctors approval to go home on Thursday to my sweet little family to finish my recovery at home. I know that Dante and Noah have both been doing great and have been so strong throughout all of this, but I also know how hard this has been on them as well. We have felt all of your prayers, love, and support out here and we are so appreciative of it all! I will continue to keep you updated on my progress, and hopefully my return home flight on Thursday.
One day post-surgery scar

One week post- surgery scar

11 days post-surgery scar after the tape was removed

Thursday, April 11, 2013

Surgery Update

It has been four days since I had my surgery and I am finally feeling good enough to update everyone on my surgery and how I have been holding up. If you have texted me in the past couple of days and I have been really short or haven't texted back I am sorry, to say the least, I was not feeling well at all. Dante and Noah flew back out here on Saturday afternoon and it was so much fun to see them! I loved having my sweet husband here with me and I could not get enough of Noah. I missed that little boy so much. We went swimming and went to the aquarium and spent the weekend having fun together as a family. Noah cracked me up the entire time he was here. Like I said before, he has been my little ray of sunshine throughout all of this. Being with my family was such a great way to relax before going in for surgery. It was the best medicine that anyone could have given me!
   Monday morning we woke up at 5 am and got ready to leave for the hospital. I thought I was going to be a wreck, but I felt very calm and just enjoyed snuggling with my baby in bed before we had to leave. The missionaries had come over the night before and helped Dante give me a blessing, and it only helped me continue to feel that peace and comfort I have felt this entire time. Once we got to the hospital it got pretty crazy. Our cab was late, thus making us late (that's a whole different story) so we were a little rushed getting ready for surgery. I threw on my surgical gown and they asked me a million questions,  got hooked up to a ton of different IV's,  my epidural was put in, and before I knew it I was kissing Dante and Noah good bye and we were off to the OR. 
   All of the doctors in the OR were super nice and were great to let me know everything that they were doing. I totally felt like a patient on Greys' Anatomy.... minus the smoking hot surgical doctors that star on the show, of course. Right away they gave my the sleeping gas, I remembered trying to fight it, just to see if I could, next thing I knew I was waking up from surgery. The neurosurgeon came and gave Dante and update while I was still asleep and told him that it was a very boring and routine procedure. He said that it went as well as the could've expected it too, and that our baby had a rather small malformation and he did great throughout all of it! Waking up was not a pleasant experience. I felt like I couldn't breath. I was hooked up to so many wires and tubes and all I wanted to do was roll on my side and take in deep breaths. Once I woke up a little bit more the most hellish feeling hit me. They had me on Magnesium Sulfate to help relax all of the muscles in my body so that I didn't start to have any contractions. If any of you have been on this terrible drug, you know how awful the side effects can be. It causes every muscle in your entire body to be super relaxed, so I felt like I could hardly open my eyes, and when they were opened I couldn't focus. I also had a really hard time speaking. I spoke very slowly and slurred everything so I had to keep repeating myself, which was so frustrating because I knew what I wanted to say, I just couldn't say it. It also made me the most nauseated I have ever felt in my life. Sick to my stomach, curled in a ball nauseous. I could hardly move and felt like barfing any time I was awake. I was also so incredibly thirsty. They had to intubate me for the surgery, and I felt like I had the worst cottonmouth in the world and like my throat was sticking together. Eventually they let me chew on a couple of ice chips at a time, which helped, but definitely didn't satisfy me. In the end I ended up throwing up all of the ice chips anyways, or at least I tried too. I mostly just dry heaved, which did not feel good on my incision to say the least. Basically Monday was a huge blur, and then that first night was the hardest. People were in and out of my room all night and I had to worst time trying to relax and sleep. I felt so awful for Dante, Noah, and my mom, who were all sleeping in the same room with me. I am sure they didn't sleep very well either. 
   On Tuesday morning Dante and Noah had a 6:30am flight to catch and were up and out of the hospital nice and early. I got to say good bye to Dante, but then started to throw up and didn't get to say good bye to my sweet boy, which broke my heart. I was still on the magnesium sulfate and still felt like I had been hit by a truck. However, later that morning Dante and Noah came strolling back into my room, they had missed their flight! Although I know Dante wanted to get back to work, I was happy they got to come spend a little more time with me. Around 9 am they finally took me off of the magnesium sulfate and almost immediately I started to perk up and felt much better. I got to enjoy a little more time with my boys, not feeling like a complete zombie, and since I still had my epidural in I was mostly pain free. Noah came and sat with me in bed for awhile and then tried to wheel my IV cart around the room and kept us all laughing. All of the doctors and nurses just thought he was the cutest thing, well lets be honest, he pretty much is, and I loved having him here with me for a bit after the surgery, he was such a good boy. I do have to give a shout out to Dante as well. He does not do well sitting around in hospitals or with anything going on with needles or throw up or gross bodily functions. He was so sensitive and positive and even held my bowl while I threw up once. I cannot express how grateful I am that he changed his flight and was there with me when I woke up from surgery. I love that man so much.
 They left later that afternoon to go home, and although I was really sad to see them go, it has given me a chance to really focus on healing and helping our other son. Since the magnesium sulfate was still in my system they didn't want me to eat any real food, so I drank some chicken broth and jello. That held me over for about two seconds, I hadn't eaten any real food since Sunday night and I felt completely empty, almost to the point of feeling sick to my stomach because I was so empty. My nurses were so awesome and were able to talk to my doctor who allowed me to eat some solid food finally! It was a dream come true. I felt so much better after that, it was like the person I was that morning, throwing up and having trouble speaking, was a completely different girl. I slept much better that night and was excited to get my epidural out the next day. 
  Wednesday morning they took me off of the epidural right away and started me on my pain killers. At first I didn't feel very bad because the epidural hadn't worn off completely at that point, but as the day wore on my pain got a lot worse. They allowed me to get up and take a shower and walk around a little bit, and that felt amazing. I showered and dressed myself on my own and felt like a new woman. Around that point my epidural had worn off mostly and I was feeling it. The incision was sore, but the worst pain was the build up gas I had. Whenever I tell people that they kind of laugh, but it was no joke. I had to be on super doses of anesthesia for the surgery and one of the worst side effects of that is horrible gas build up. I felt like it was putting a ton of pressure on my incision and my mom said that I looked like I was about 8 months pregnant. It was awful. I didn't want to eat anything or move, I just wanted to curl up in a ball and lay there. Any time I moved I felt like my whole body was going to burst open. The nurse got me up and walking a little bit and I also started to rock in the rocking chair in my room and that helped a ton. Who knew being super bloated could be that painfully consuming? By the end of the day I felt a little better, but I was nervous to stop rocking my chair and get back in bed because I knew when I woke up I was going to be in pain. 
  When I woke up today at 4:30 to take some meds I didn't feel too bad, but when I woke up for the day at 8 it was a different story. I didn't have as much gas pain, but now felt a ton of pain from my incision. Our little man is sitting really low and I can almost always feel when he starts moving around down by the cut. After a couple doses of pain killers, some lunch, and a 3 hour nap I am feeling much better. They did a doppler to hear the baby's heartbeat and while we were doing that he kept kicking the device on my stomach, which was very reassuring. I loved hearing his little heart today. It reminded me of the reason why I am out here and why I am going through all of this. He is worth every minute spent here and every minute of pain felt. The nurse said she was very surprised at how quickly we were in and out of surgery and that the neurosurgeon told her that our baby really didn't have a huge malformation and should heal beautifully.
   I am so grateful for modern medicine and the help it has given our son. I am also grateful for the movement I have felt from him and how hopeful the doctors have been with both of our recoveries. I am hoping that we will stay on this path of healing and will be able to return home to Utah soon. It has been great having my mom out here with me, but we are both anxious to get to Utah to be around our family and friends. Tomorrow I get discharged from the hospital and will hopefully be staying in the Ronald McDonald house down the street from here. My brother Cody and his wife Cheryl are also coming up from North Carolina to visit this weekend, so that should be really fun to see them and a great way to help pass some of the time out here. Thank you for your continued prayers and positive thoughts in our behalf. We love all of you and are so grateful for all of your support!

Wednesday, April 3, 2013

Evaluations, surgery date, and Philly

   These past two days have been absolutely insane. We flew into Philadelphia late Sunday night and had to be at the hospital bright and early Monday morning to start our day evaluation process. Monday started off with a fetal MRI, it took about an hour and I was so nervous they were going to find something else that would deny us the chance of having surgery, but they weren't allowed to tell us anything until the end of the day after all of our tests were done.  After the MRI we had a 2 1/2 hour ultrasound.... yep 2.5 HOURS!! They needed to get images of every part of our baby, head to toe, and our little man was moving around like crazy, making it extremely difficult for them to do that. They had me rolling back and forth and even tilted my  bed so my feet were in the air and my head was down low. It was the weirdest ultrasound I have ever had, but I definitely didn't mind it. It was a huge reassurance to see and feel our sweet baby moving around and kicking all over the place. As I mentioned before,he has a little club foot on his left side because of how the spinal column closed and formed. Where the myomengeocle is at on his back, certain nerves are exposed that help with walking and hip/knee/and ankle strength and movement. This has made the doctors unsure of how or if he might ever walk and we won't know anything about his ability to walk until after he is born but being able to see his left leg moving and kicking and his ankle flexing and extending gave us a great feeling of peace. I know that the doctors are not very hopeful, but I have felt a certain calm and confidence that my son will walk and run and will do anything in this life that he wants to do. Heavenly Father has blessed us so much in helping us to have these feelings and reassuring us every step of the way that everything is going to be ok.
   After the ultrasound it was afternoon and they FINALLY let us eat lunch. I was getting pretty hangry, if you know what I mean. After lunch we talked with a genetic counselor, a social worker, did a fetal echocardiogram (to make sure he didn't have an heart problems), and then lastly met with a fetal surgery specialist. When meeting with her, she told us that everything came back clean and that we were still good candidates for the surgery! We were so excited and so grateful that our little boy doesn't have any other brain, heart, or developmental problems. She explained every detail (good and bad) of every option we then had from that point. We could either choose to carry our baby full term and have him be treated with the surgery after he is born, have the surgery now in-utero, or terminate the baby. Of course option 3 was absolutely always out of the question, and after hearing all of the pros and cons of what surgery would mean for our son and for me, we still felt very strongly, 100%, that we needed to continue in the path of doing the procedure. After we finished for the day, we felt extremely good. I thought that I was going to be an emotional basket case the whole day between stressing about passing all of the evaluations and missing Noah like crazy, but we left feeling calm, confident in our choice, and happy.  We went and walked around Philly, saw the Liberty Bell and some historical sites, and of course Dante had to get his Philly Cheese steak.  We also decided to try and brave the bus and train system. Cabs are just too dang expensive!! I am so glad that Dante was doing all of the navigating, if any of you know me well, you know that I am awful with directions. After only missing a couple of buses and doing a couple of switching to different buses, we made it back to our hotel in New Jersey.
  Tuesday morning was another busy day. We had to get up early for our hour bus ride into the city, and we were anxious to talk to all of the doctors to get a surgery date finally set. Seeing as how Dante's return flight was scheduled for Saturday, we were really praying that the surgery would be Friday. We first met with the neurosurgeon who will actually be operating on our baby, then we met with the Obstetrician who will be monitoring me and did a full health scan to make sure that I am healthy enough to do the surgery. After lunch we met with the chief of surgery (who we loved! He made us feel so welcome and ready for the surgery. He also has worked with my doctor back in Utah when they were both in San Fransisco and gave us a lot of hope of being able to go home and be monitored by him after the surgery), and then lastly we met with a pre-term baby specialist who told us everything that could happen if our baby was born too early. To say the least, that was my least favorite meeting of the two day experience. Although there are a lot of risks for both me and the baby, at the end of the day we both still felt great about having the surgery done. We know that it is going to go really well, we have an amazing team of doctors working on us, and we know that our little boy is going to do great and react very well to the surgery. I don't think I can put into words the peace and comfort I have felt throughout this entire process or the feelings I have felt knowing that everything is going to go incredibly well. I once again, am so grateful for our Heavenly Father and how much we have seen his hand in all of this. Although surgery is scary, especially on a fetus, we know it is the best decision for our baby.
  After all of our doctors met together and discussed surgery dates and times, we are on the board to have the operation done first thing this Monday morning (the 8th). I will admit, I was upset when I learned that we had to wait another 6 days for surgery. This whole process has been a huge lesson in patience, especially for me. It also dawned on me that Dante wouldn't be there with me for surgery, which made me sad, but he brought up a great point. If this is the worst news we have gotten the whole time we have been here, we can't complain too much. Besides needing this operation, our sweet boy is healthy and hasn't had any other ailments pop up in any of the tests we had done. Dante also changed his flight so that he could be here for the surgery with me. Dante has been so great throughout this whole process. He is my rock. He has kept me grounded when I start to become irrational about the situation, and he is always there to comfort me and hug me. I love him so much and am so grateful that he picked me to be his companion forever. He is going to be a great dad to both of our boys. Noah, baby boy, and I are all very lucky to have him in our lives.
  After we finally got a set surgery date, Dante called his boss and told him what is going on. Since I am not really doing anything until Monday, his boss flew him home last night so that he could work and not have to miss so many days. So I am just here kind of hanging out by myself for a couple of days. I did get to skype with him and Noah this morning,and I loved it. Noah is so excited to be back with his dad. I know he had a blast with his cousins, but there's nothing like coming home to your own bed. So for the rest of the week Dante will be in Utah working and will fly back out here on Saturday so that we can have the weekend together before I have surgery. I have to meet with the doctors for most of Friday to do all of my pre-op care, so it is mainly just today and tomorrow that I will have to entertain myself out here. There is a shopping mall across the street from my hotel, so I will probably wonder over there and then get a workout in at some point today. I will admit, it was pretty awesome being able to sleep in as late as I wanted. It is 12:30 here and I have basically just slept all morning... which NEVER happens :).
  I am really looking forward to this weekend with Dante. He will fly back to Utah Tuesday morning after surgery, but my mom will be getting out here Monday afternoon, so I won't ever be by myself. He also might be bringing Mr. Noah with him, which would honestly be a dream come true. Saying bye to him Sunday morning just about ripped my heart out. I miss that little boy more than anything, and it would be so fun to play with him all weekend before I have to have surgery. I am so grateful for the amazing team of doctors we have helping us and for how smoothly these past two days of testing went. We have a long road ahead of us, but I know that both the baby and myself are going to recovery quickly. I can't wait to meet my little man, they said I can actually carry him to 37 weeks instead of just 36, so my new goal to make is July 19th. Once again, the doctors aren't extremely confident that I will make it that far, but I am feeling pretty dang determined to prove them wrong. Once again, I can't express enough thanks and gratitude towards all of those who have helped us, written us messages of love, and prayed/fasted for us. We have felt that power of prayer and know that it is working. Thank you for keeping us in your thoughts and prayers, we love all of you. Please continue to do so as we head to surgery this coming Monday. I will continue to keep everyone updated with as much information as I can!