Surgery Day- May 16th

Well May 16th was the big day for fs and it was here!! Matt had got back to the hotel around two am and we both maybe got 2 hrs of sleep. We had to be at children's hospital at 6 am to check in and get things started like all the paperwork, last minute questions with the doctors, all that history they need for labor and delivery and of course IVs and the epidural too. I didn't realize that I would have to have an epidural also with this surgery. I guess it only made sense once I thought about it ;) this was my room while getting ready for surgery. The bathroom was beautiful!!

Everything went by pretty fast that morning and before I knew it I was saying goodbyes to Matt and my parents and me and my little man were being wheeled off into the OR. I remember going in the OR and having so much anxiety. The room was huge and there were already so many people in there getting things ready to go. (I work as a surgical tech so the OR is nothing new to me, but not knowing how things would work and what I would wake up to was a sick feeling)  I was told that during the surgery there would be up to possibly 30 people in the room with all the teams that needed to be there incase they would have to deliver Hudson at that time. I was hoping to wake up still pregnant!! 

After 2 hrs of surgery (seems quite fast) I woke up in the pacu in a horrible amount of pain.  I 

remember the doctors asking if I could feel my legs and I lifted them high up in the air. Obviously my epidural didn't work so I had to have another one fresh out of surgery. They let Matt come in when i was awake and It was great to have him by my side. I just remember hearing the                              

doctors say that things went well and I was still pregnant. At that point that's all that mattered!!

Denver Bound

After making it back from Denver and chatting with people who means the most to us we started planning on how we could make this work. Knowing if we went through with this that we would be in Denver for possibly up to 4 months if Hudson decided to come early......
Matt works with a construction company called Ames. He had mentioned to his boss that it was possible that we may be doing Fetal Surgery in Denver

and wondering what the chances would be if he could be transferred for the time we were there to be with me but still be bringing in money. After all I wouldn't be working til after  Hudson arrived and bills still needed to be met. Within a day or so they let Matt know that it would not be a problem to be transferred and they would even pay for our place to stay where he would be working. The only downfall was him working graveyards. But hey he would be able to work and be with me so we could not have felt more lucky. Things just continued to fall into place and we had made up our minds this was what was supposed to be happening. Nevaeh would stay with my family and Matt's and they would make it work. I was sick to be leaving our little girl but we knew that we needed to focus on our little guy too and give him the best chances at life.
I called and scheduled one last consult and surgery for the 16th of May. Matt had to leave that Sunday (Mothers Day) and my parents were going to drive me out Monday and stay with us for the week while I had the surgery. It was a time when I needed my parents by my side also. Things were becoming real and I was so nervous to have this big surgery. I overanalyze pretty much everything. And decision making is not a strong point of mine so for the whole week up until we signed papers and I guess the morning of surgery I would ask Matt and my parents are you sure this is the right decision.... In my mind I knew it was because things just fell into place for it not to be. I knew that if we chose not to we would always wonder if we should have and what would be different.
We had our last consult/paper signing Wednesday. Tues and Wed I had the steroid shots to help develop his lungs if he would choose to come early. That night my parents and I went to dinner (Matt was working) and had some good laughs and headed back to the hotel that was now home for a couple of weeks, I took my pill that I was scheduled to take to help with relaxing my uterus and waited for Matt to come home early. The big day was only a couple hrs away and the anticipation once again sat in.

Big Decisions Ahead

Between the time of finding out that our baby boy had SB and our next Perinatology visit we were busy doing research on the in utero fetal surgery that was being done in 5 states. In the beginning we both felt that it wasn't for us. The more we talked to our families and doctors we figured well maybe we will go consult and see if we even pass the guidelines to do so. So off we went to Denver to do a full day of testing and consulting. Talk about overwhelming. We started the day at 7am after getting into Denver late that night. The first thing we did was an MRI of our little guy. Yuck is all I can say.  They told me when I went in that it could range from 1-2 hrs depending on how active Hudson was.  An hr and forty five mins later I was done!! Thank goodness for technology and being able to watch "The Wedding Planner" or this mama would have went crazy!!!
Next appt was the ultrasound with a high risk perinatologist. Things hadn't changed from the last ultrasound we had in Utah a week prior. Everything looked great other then his ventricles and the opening on his back. He was definitely showing off at this point. The Dr. Kept saying how he couldn't believe how active our little man was. That always put a smile on our faces and gave us a sense of peace. After being in ultra sound for an hour and a half we were booking it to our next appt which was Hudson's echo. Luckily they were a little behind so we had a minute to grab a bite to eat and get some fresh air.  His echo turned out great and we were told his heart was "beautiful"!! Finally some good news to all the bad we had received the last few weeks.
By this time it was about 245 and we had til 330 til our "Team Meeting" with all of the doctors who we had met with and the doctors who would be in on our surgeries. The anticipation was setting in after a long day of testing we couldn't wait to get the answers we were looking for and catch our flight home. When we walked into the meeting all the doctors stood up that were sitting around a big table and welcomed us. I began to sob. I had held it together all day but at this point I was completely overcome with emotions and happiness that we had some amazing doctors who were there to help us and our little man!! After a long meeting with the doctors discussing the lesion level, the pros and cons to fetal surgery and everything else the surgery entailed we were told we were candidates for fetal surgery and now was the time where we had to make the biggest decision of life's yet. We had a week to do so where the surgery had to be done before I was 26 weeks. Fetal surgery or not?

Wait........What????

After finding out we were going to add a little boy to our family,( which may I remind you this is only the second boy and grandson on the Peterson side) we were still so excited. I was also still pretty sick. Living on that amazing drug Phenergan. my 21 week ultrasound was approaching and I was feeling anxious. This wasn't too out of the ordinary for me because anyone who knows me knows that I over analyze just about anything. I am always expecting the worst but hoping for the best. I'm definitely a pessimist. Matt had to work that day and I just wanted someone to be with me so I invited a very good friend of mine to come. I had several ultrasounds already because my doctors were amazing and if I was nervous about one thing I was in having an ultrasound. So needless to say I just wanted someone there just in case everything didn't look "normal" with our baby boy.

 

When we got into the ultrasound room things were looking great. My baby boy had all fingers and toes. All of his limbs and everything was measuring just right. One thing I had been told several times from the ultrasonographer was that my uterus was very tilted. This made it hard for him to see my little guy from the position that he was in. We ended up going over everything and doing his head last. With only the head left to measure things started to get quiet. I could tell something was off. The Dr. began to explain that my little mans head circumference was measuring bigger. Also that his ventricles looked enlarged and that he had a lemon shape in the front of his skull. First not really understanding I looked at him and said so this is not normal and something is wrong?? Yes something was definitely not right. This caused him to go back to the spine and while viewing it over and over again he was able to see an opening. I remember just laying there feeling peace and like this was all going to be ok. Looking back maybe I was just in shock. He then called my OB/GYN and I was to meet with him the following day. As soon as I had told my friend goodbye and thanked her for coming I fell apart. I climbed in my car and just sat there. So confused on what I was just told. How could this be?? Was something really wrong with this precious baby boy I was carrying? What was wrong? Did he have Downs? Would he be ok? How do I explain all of this to Matt and my family? What did our future hold and better yet was my baby going to live?

 

We had found out on a Wednesday evening and we had to wait until the following Tuesday to meet with a Perinatologist. Needless to say I believe this was the longest weekend of our lifes. Not knowing what condition our son had. So many crazy things played through our heads. After talking with my OB/GYN and doing a little bit of research on our own we had a pretty good idea that our little man had Spina Bifida. After meeting with our Perinatologist it was confirmed that our little man had Spina Bifida. He was diagnosed with Spina Bifida, Myelomeningocele, which was the worst case of SB. He  had a Chiari Malformation that came along with the lemon shaped skull, enlarged ventricles, and the sac located on his spine opening at L4-S1.  He didn't have clubbed feet and his heart was ever so strong. As heartbroken and scared as we were we knew we would do whatever it took to give this little guy the best chance at life possible!!!!

Nausea, Nausea, Nausea..... Oh BOY!!

After getting a positive pregnancy test I dare say I took at least 6 more tests just to confirm that this was really happening. To me it was unbelievable in a way. I hadn't become pregnant in at least 3 years of trying. The nausea and fatigue set in pretty fast. Around 10 weeks pregnant I was being taken over the Utah Valley Hospital to have fluids through an IV. Phenergan soon became my best friend if I wasn't throwing up I was feeling very nauseous. Things I liked to eat became my least favorite things to even think about and my husband I knew was growing of my complaining. Needless to say I couldn't take any prenatal vitamins. The winter was long but 16 weeks was approaching and this was making the nausea all worth it.

The day had finally arrived to find out what we were having. We were in the ultrasound 45 mins until Hudson decided to share with us we would be adding a baby boy to our family. We could not have been more excited. Matt would have a little hunting partner (or should I say two, Nevaeh loves to do everything with her daddy) We would have one of each, a second grandson and I would have my mamas boy!! Telling friends and family was so exciting.

Some of the beginning

So I will just start with a brief overview of our past journey. Matt and I were married in June of 2007. After being married for about a year and a half we decided to go off birth control and just see what happened.  I wasnt in a huge hurry to have children but I knew that Matt wanted to sooner then later. I was thinking about school and still trying to decide where I wanted to be career wise in my future. We decided that I would go ahead and start Surgical Tech school and if I were to become pregnant then great. Shortly after we unexpectedly ended up getting custody of our 3 month old niece. This then turned into becoming permanent and we could have not have asked for a greater blessing.  Adoption was final with Nevaeh soon after her first birthday and she was forever our little girl. With Nevaeh growing up we decided we should start trying again so she could have a sibling. Nevaeh turned 3 the end of Sept and we still had not became pregnant. After both of us had been through some testing we both realized we may never be Able to have children and we were ready to be done trying. I was ready to start looking back into school for my RN. A week before Christmas I had a positive pregnancy test. I couldn't believe this was happening. This was my first time ever having a positive pregnancy test in my life and all of the emotions were overwhelming. Little did I know this was the beginning of a journey that would change our life's forever in several different ways and many ups and downs.

The beginning of a whole new journey....

Wow. Im not sure where to even begin. I have been told by so many people in my life right now that I need to get our experience as a family out there to help me cope with the loss of our precious baby boy Hudson.  I hope with letting you in on our journey through the last couple years will maybe help at least one family out there who is struggling with not being able to conceive for a couple of years to adopting and then getting pregnant and finding out that your unborn son has Spina Bifida when you were ready to be ok with just having your one angel baby. These last couple years have been the hardest/ rewarding years of our life and I hope you enjoy reading this as much as I hope to enjoy writing it. Just bare with me in this difficult time of our past journey, our present journey and our unknown future that life holds for us!!!